I'm starting a non-profit org. for Asperger's Syndrome and related issues

[liberalhistorian]

As many of you know, I'm the single mother of a 12-year-old boy who's extremely bright and endlessly curious, but who also has Asperger's Syndrome. Asperger's is a type of high-functioning autism, it's its own syndrome that's under the umbrella of "autistic spectrum disorders."

While it's been recognized in Europe for almost sixty years, it's only been officially recognized in this country since 1994. Doctors and other health care professionals are only now beginning to fully understand the syndrome, its symptoms, diagnosis, and treatment. I was fortunate in that the pediatric neurologist Chris was referred to in 1998, when he was seven and in first grade, was from South Africa and knew immediately what the diagnosis was the moment Chris started talking to him. I've known other parents who had to go from doctor to doctor and do their own research before finally discovering the correct diagnosis.

There are so many needs related to the syndrome and those affected by it, including education, advocacy, research, financial assistance and referrals, treatment assistance and referrals, etc., etc. I work for an attorney, and one of our areas is business formations and incorporations, including non-profit organizations. It wouldn't cost much to set it up and file the basic paperwork. Once it's set up, I could then apply for grants and do fundraising to assist in building up a treasury to begin the work of the organization.

So if there are other Asperger's parents on here, let me know, and I'll get you the information on when I get it set up and the initial paperwork filed. Also let me know your needs and concerns, and we can go from there.

[THUNDER HANDS]

1. I don't have it, or know anyone who does

But I just wanted to say I think it's really cool you're doing this. I hope it works out great for you and you help a lot of people. :hi:

[liberalhistorian]

3. Thanks, Jason!

Be glad you don't have it, btw!

[blondeatlast]

2. Please read my PM to you.

[Kathy in Cambridge]

4. Thanks-my sister just married into a family

where there are several cases of autism and asperger's syndrome. It has been particularly hard just getting a diagnosis of Aspergers, and there are few school systems that are equipped to handle these special kids.

Good Luck with your endeavor!

:toast:

[liberalhistorian]

5. Yes, that is a major problem

as far as a lot of school systems are concerned. That's not their fault, since it's so new in this country, but it remains a problem. They know how to handle autistic kids, for the most part, but Asperger's needs a different kind of treatment and handling than regular autism. That's one of my goals, to set up an educational outreach to assist school districts in understanding and treating Aperger's.

[carols]

6. My twins are autistic

They are 13. I am familiar with Asperger's because there was at least one child in their speech therapy class with Asperger's. He wound up being one of my daughter's best friends until they went to different schools. Don't know if your "related issues" covers autism, but obviously one of the things that concerns me the most is what will happen as my husband and I age. Will they ever be able to live independently, and if not, what will become of them? I lack the resources to set up any sort of a trust fund...
Carol

[liberalhistorian]

8. Yes, one of the related issues

will be autism, although the primary focus will be on Asperger's. One of the things I want to do is assist people in your situation, who may not have the resources to set up funding for their children when they're gone but who still need to make some kind of arrangements.

[carols]

10. That's wonderful news!

If there is anything I can do to help you, please let me know. You can e-mail me at my DU mailbox or send directly to [e-mail] (I can't remember how many posts I needed to have in order to send from the DU mailbox - I am approaching 200 WOO-HOO! - but if the magic number is more than that, you will need to use the personal addy :-)
Carol

[liberalhistorian]

19. Thanks, Carols!

I appreciate it.

[HereSince1628]

7. I'm guessing you are aware of this group or is it you?

http://www.asperger.org/index_asc.html

[liberalhistorian]

9. Yes, I was aware of

it, but it's not me. I'm thinking of a different kind of approach, although it's great that that group exists because the more groups and resources there are, the better for those who need such services.

[ikojo]

11. I know three people who have kids with

AS. All three kids are bright.

There are a lot of adults who have AS but were never diagnosed. There is a Asperger's Quotient you can take online.....

http://www.wired.com/wired/archive/9.12/aqtest.html

Many believe that Silicon Valley is populated with AS people due to the intense focus and single mindedness associated with software and other high tech programming.

[liberalhistorian]

20. I remember when Chris was initially

diagnosed, the doctor told me there were three professions in particular in which people with Asperger's seemed to be most heavily represented, and they were college professors, dentists, and, yes, computer and software professionals.

BTW, did you know Bill Gates has Asperger's?

[Bridget Burke]

27. 36: Not a big surprise

In my long-ago youth, I tested well but had problems in school. At that time, I was just considered weird.

One autistic cousin is institutionalized. There's some behavioural treatment for these kids now, but that was before his time.

[LWolf]

12. No, but

let me know anyway. One of my past students is Asberger's, and he and his parents stay in touch. I'd like to pass it on to them.

[Booberdawg]

13. I just wanted to give you my support and vote of confidence.

My Jason was mentally disabled and often mislabeled as autistic by laypersons who were not familiar with all of his capabilities and medical history. Autism tends to be a catchall diagnosis for the uninformed. He was simply brain damaged at birth, and the “other” catchall term they boiled it down to was Cerebral Palsy – but then he was hardly physically handicapped. Although, his motor skills were affected to some degree, he was basically a perpetual 3-year old, mentally.

I envy your involvement with your 12 year old, and especially your exposure to the other kids he is involved with. I lost my son to an accident, and due to the nature and liability of the accident that took my son from me, I was cut off in a heartbeat from any and all activities of the other kids I had grown to love and adore over many years.

That was 5 ½ years ago. I miss those kids terribly, still. My life revolved around them, at the time.

Yours is a noble and ambitious undertaking you seek. I wish you the very best.

[liberalhistorian]

24. I'm so sorry about your son,

I can't imagine having to deal with that. Is there a volunteer group you could join, perhaps, one that works with such children?

[Breezy du Nord]

14. I don't think I know anyone with it

But I know my cousin has autism.

Good luck! :hi:

[Kat45]

15. There's a kid in my church who has Asperger's

His parents are involved in special ed groups and I think a group for Asperger's as well. Just seeing him at church, his behavior, the things he's able to do and the things that are problematic, has given me a decent understanding about what this syndrome does.

What you're doing is excellent. Good luck with it.

[foo_bar]

16. I have mixed feelings on this

It's tricky assigning pathology to a continuum of "disorder" whose clinical manifestation is essentially social dysfunction. Not to say you and your son don't suffer, but the very act of labeling it a pathology (a la DSM-IV, which once considered homosexuality a similarly billable aberration) can perpetuate as much social stigma as the thing itself.

I speak, somewhat haltingly, as someone labeled "borderline autistic" for learning to read at 18 months (among other things of course). Despite the dire prognoses, I went to college at age 15 instead of living under a "special needs" microscope. As the DSM's diagnostic criteria for Asperger's include "formal, pedantic language" and "all-absorbing narrow interest", I reckon posting to DU is one-fifth of the way to a disease.

[liberalhistorian]

18. I sort of understand where you're coming

from, believe me, and "borderline autistic" seems to be one of those catchall phrases that are used when nothing else seems to apply and they don't know what else to call it.

But Asperger is more than just social problems. It also involves intense focus on and interest in a certain subject for a certain period of time, in which the person learns everything possible about that subject, then they move on to another subject. They have great difficulty with transitions and with focusing on anything they're not interested in, which is really not good since everyone needs to learn to transition and focus even on things they may not want to do or have much interest in. It can greatly affect every area of your life, not just socially.

And by socially, they don't just mean awkwardness or difficulty talking to people. It also means that the person has no sense at all of social cues and interaction, and what's appropriate in certain situations and what's inappropriate, and this can really cause some problems in every area of life, including employment and schooling.

Also, most have great difficulty understanding and empathizing with anyone else's feelings and viewpoints except their own. They just don't understand other people's feelings a lot of the time, even if they feel the same way themselves, they have a great deal of trouble believing that others may have the same feelings and that they need to be mindful of and respect those feelings.

[put out]

17. When you get up and running, please post your website.

Thank you for doing this. I work with several AS kids and any additional information is greatly appreciated by anyone in their world.

[liberalhistorian]

34. I will certainly do that!

It'll probably be awhile before I'll be able to have a website, though.

[YNGW]

21. My daughter has Asperger's Syndrome

She's 7 and absolutely amazing. She can produce art, any type of art, and it looks like a Rembrandt.

We've been rather fortunate. The public school systems in NC had resource teaching and so forth, but it was awful. We soon figured out that they only intended in mainstreaming our daughter rather than teach her.

Fortunately, their is a private school in our area where parents of an asperger child have set up a "school withing a school" specifically designed for asperger children. The children are all in the main class, but an adult who is trained in dealing with asperger's shadows each child in their class (one shadow per child), and helps them learn how to organize their work. If certain things come up, like timed tests which pressure many asperger patients so that they cannot funtion because of the pressure of time restraints, they will allow the asperger students to take the tests at their own pace. They even have their own room in the school where they can go should they feel the need during the day to get into their own quiet place and regroup. And the children of the school are all aware that these students are among them, they know who they are, that they process information differently and why, and because of that the students treat them like they are the special people they are. Not in a patronizing way, but they don't go around thinking they are "weird". My 2nd grade daughter knows just about every student from K-12, and they all know her and lover her.

Best to you and all the parents with asperger's children. Fortunately, NC has several private organizations in which we participate for people with aspergers of which my wife is more familiar.

[liberalhistorian]

23. Do you have any info on how you got

that school within a school started and how to run it? I know there are many kids in my son's district who've been diagnosed who could really use something like that. The district's been wonderful in trying to understand, diagnose, and treat these kids, but two recent levies failed and I'm really concerned about how they're going to manage to continue with the special ed services they currently have.

[YNGW]

26. Reply

I didn't get it started. I wish I was that resourceful.

Do you mind if I PM you? There's are things I would need to discuss which would need to remain private.

[liberalhistorian]

28. No, I wouldn't mind

at all, PM away!

[JohnKleeb]

22. LH right here

I have it.

[nostamj]

25. check your PMs

and best of luck with the project!

nost

[KamaAina]

29. There are several people with AS or autism right here at DU

you're talking to one. Actually the specialists at Yale had trouble deciding between AS or classic autism: the means they use to distinguish between the two involves comparing subscores of an IQ test, and both of mine were off scale!

Is this new group to be national, or regional? And if regional, where? If it is on the East Coast, I have numerous contacts from my time there, where I was in some demand as a speaker at conferences and the like.

While I was at Yale, I did some data entry and analysis for the team that finally got Asperger's included in the DSM-IV psychiatric manual used in the U.S. As you mentioned, it had been in the ICD (used pretty much everywhere else) for some time.

[liberalhistorian]

32. At first, it will probably be regional

since I don't want to bite off more than I can chew. I'm in the Northeast Ohio area, and there are several excellent autism resources here. Then, once things get rolling regionally, I'll try to expand it nationally.

One of my main concerns will be getting the necessary help for those who may not have the financial resources they need. Treatment for any kind of autism is still very expensive, and there's often a sort of "elitist" attitude in treatment circles because of that. Well, families and children without a lot of financial resources also need and deserve the necessary treatment and support, so I intend to really work on that aspect of it.

[ikojo]

33. While Asperpergers may have been in the ICD manual it

was not a reimbursable diagnosis until it appeared in the DSM IV, the bible for social workers/psychiatrists.

Look at the DSM IV...among the diagnosis you will find is one called tobacco use disorder (305.1).

Another interesting diagnosis I saw on a claim the other day was undersocialized aggression disorder...I had never heard of that one!

[SmileyBoy]

30. I have it. Diagnosed in 1997.

It really helped explain a lot of problems I was having. I believe I inherited it from my mother's side. My aunt has it, but she hasn't been "officially" diagnosed. But I know she has it though. Whenever I talk to her, I know she has it just by the hyper-verbal voice (talking at someone instead of with them).

[beawr]

31. A Parent

I have a five yr. old boy that has been flirting with the edges of the Autistic Spectrum. He's hyperlexic, maybe PDD, maybe not, depending on the evaluator, and Asperger has also been raised as a possibility. It boils down to his social skills since he does now communicate appropriately.

This is so screwy a diagnostic nightmare sometimes that I have found evaluators that are willing to write up a diagnosis tailored to receive maximum health insurance and governmental benefits.

I would be more than willing to be active in an organization that might help cut through all the bullshit associated with highly functioning autistic kids.

A story - I was quite concerned that my son could be rather severely effected until he did one thing, and that was to tell me a lie. I corrected him once, and he mumbled "Shut Up" to me. I responded with the classic. "what did you say?" to which he replied "I Love You."

[TrogL]

35. Check your PM

for lists of mailing lists and groups