Jim often says that he thinks best when in motion, whether driving, biking, walking, running, on the train—gives him more focus. Lately he’s been referring to himself as having “Asperger’s moments” in social situations—guess more people need an education in conversational multitasking.

“…his ability to focus on many different things at once is indeed a strength (and can also makes things difficult for him….”

Errr, didn’t you mean difficult for you? I’m quite sure he’s just fine with the conversational multitasking.

FWIW, I’ve been diagnosed twice with ADD (sans “H”), and yet the way it “presents” for me is quite different: though I go off on tangents and constantly feel the need to interrupt (owing to severely poor short-term memory), I can’t stand to do/work on/talk about more than one thing at a time. It’s almost as if my alleged A.S. perseverative(?) trait is doing battle with my ADD traits. The sad part of that, if true, is that it’s also resulted in my being unable to perseverate in any useful specialized manner, and my career suffered for it. I’m a sometimes-unwilling jack of all trades.

I wouldn’t trade my boundless curiosity for ANYTHING, though, not even financial and career success.

Mark Craig

We tried a number of biomedical approaches for Charlie when he was younger (he started the gluten-free casein-free diet when he was 2 years old). He had rashes all over his cheeks and body and I have a few photos of him eating ice cream and looking, well, not exactly focused. As he’s gotten older, focusing on his education has helped the most, in his case—has helped him manage the behaviors that made learning so hard (SIBs). I’ve been to a DAN conference and seen a DAN practitioner, when Charlie was younger.

Mark, thanks for the mention of “other neurodiversities”—living with Charlie has made me more than aware of these—I’ve mentioned my husband having ADHD and his ability to focus on many different things at once is indeed a strength (and can also makes things difficult for him—-our conversations are usually on several different topics at once).

I am so excited about the progress he has been able to make through a DAN protocol physician, I want everyone to be able to experience the same. I know realistically that’s not possible as children often come to “autism” by varied routes and to different degrees, per se, and respond differently to different treatment options.

When we take our kids to alternative doctors and pay a lot of $$ for NAET, BioResonance, Hyperbarics, IV meds, detoxification, are we not looking for “cure” for the “behaviors” that led us to seek these things in the first place?? My son was in an opiate fog for so long — he was miserable. Getting rid of mercury fillings and dealing with the “gut” issues has made all the difference, for Gavin. Awareness and proven educational interventions all play a role in “cure” if progress is made. These all address “daily issues”.

At any rate, there is always so much for me to learn from all of you, and I appreciate readers not jumping off the deep end at any comments, but seek clarification if something I have posted comes across wrong.

There really are SO many issues related to all the different aspects of Autism and/or ND involvement. Thanks for listening, and being here. BTW, Gavin is 10 also — and truly a great, great kid!!

The fact that an organization is a “charity” or “non-profit” might suggest some economic humility on the part of its officers, but it’s often the case that those officers decide to reward themselves quite handsomely for what they perceive as selfless work. Not so selfless when a private jet and swanky digs are in play, perhaps.

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I am a professional that has reviewed many non profit organization’s IRS Form 990s. Autism Speaks Form 990 raises serious red flags. Serious. This is all from the official filing for 2006.

1. Three members of the Board of Directors received $2.5 million for their own organizations.

2. The President Mark Rothmeyer, just received a 5 year contract for about $2,000,000

including bonuses with no prior background with autism.

3. The grants are primarily going to those representing institutions that are reviewing the grants. There is no indication that these conflicts are independently reviewed

4. The location of this small and new foundation is in very expensive downtown New York facilities rented for $200,000 by the institution that is run by the Chairman of Autism Speaks.

5. A expense of a Private Jet plane for $57,000 was noted. This is very unusual for a new non profit groups.

6. The head of the scientific review received the majority of the funds for 2005 for his institution for a data base – almost $3 million

Since the funding is now from the public – and the advertising and promotion tugs at the publics heart strings with images of families in need – the funds collected MUST be about those it raises the money for.

The following are all taken from the Form 990 filing

Web Site $830,000
Software for the computer $514,000
Lawyers $440,000
Computers $337,000
Public relations $285,000
Office annual rent $200,000
HR consultant $110,000
Editorial Consultant $76,000
Private Jet Plane for someone that entertained $57,000

Mark Rothmeyer* $360,000
Peter Bell [$240,000?]
Alison Singer $168,000
Mr Ringall $150,000
Andy Shik $110,000

Remember all the above also gets significant fring benefits that
probably add.

Mark Rothmayer also can get $50,000 more with a bonus a year benefits

Here is the AS 2005 990. Here is the 2006 990.

Further discussions on AS allocation of funds, choices and ethics can be found here, here and here.

Read all post on Autism Speaks here.

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I am sorry about all the distress that appears between JS and the rest of the people blogging here. I have nothing to offer either way. There is a bigger fight out there, and a need for unity (strength and power) among the Autism/Aspergers/PDD/ADHD advocates.

Our children suffer no matter where they fall on the spectrum, for a variety of reasons. There are “causes” for the increase in these conditions; treatment options — Pharmaceutical companies… well that’s another fight.

The future for these kiddo’s and our communities, our educational, social service, psychiatric, financial and criminal justice systems will soon become unable to handle the generation’s of kids are affected negatively in some way. I would like to find more information on projections and a plan for how to address the more pressing issues of how, as a society, a large “community” or “villiage” we are going to help our children become independent and self-reliant, contributors vs. dependents in the future of all. For those whose outcomes may not include independence and self-reliance — what and how are we going to take care of all these kids as they enter adult hood??

You may have heard about an 8 year old autistic boy who “accidentally” caused the death of one of his 9 month old sisters (twins). Because I am on the Board for the agency which provided help to the family I had an opportunity to meet directly with the the boy and his family.

It was a terrible situation in which the media inappropriately reported the circumstances and paired the situation to children who “kill” children and followed by a story reporting what is wrong with the criminal justice system in that children under the age of 10 could not be held accountable.

As I mentioned, I met with this boy. Clearly “autistic”. What this means to many is the inability to see outside of themselves, sense of danger, cause and effect, possess judgment skills…. even after his 9 month old sister was dead from falling down the banister (the “slide”) the boy continued to care for her, attempted to feed her cereal to help her wake up… etc. What’s going to happen to this boy if this part of his intellect and development is arrested at this stage??

As parents of these children, we are all so stressed, our life expectancies are not promising. Who will care for our children when they still need help when they are adults? Are we establishing plans for them? Is society ready to do the right thing for them? Are there adequate resources?

Yes, we need a cure — or at least something!! Do you see the crisis pending? I do, and I am very concerned.

Regarding the comments JS made, I hope there can be some resolve so we can move on to the reality of what will become of our children and nation.

What upsets me most, and JS if you read this please explain, is the information that came out based on the financial audit of Autism Speaks. JS, Please put the money where it is grossly needed. So many of us parents have had to go to one income households to fight for our kids. Personally, I am blessed that we are ok. Many families are not. What can AS do to help on the “front lines”? Many parents have to choose between their financial stability, saving for the future and their children’s needed therapies.

It really concerns me that there is possible abuse of funds, donated funds –from people who really would scrape the bottom of the barrel if it meant to make a difference to help children, by the “corporate big heads” at Autism Speaks.

Say what you will, JS, but at the end of the day, when you soak into your lifestyle, please think about the lifestyles the majority of the parents with children on the spectrum are having to endure — and they don’t whine about it.

Please, I pray for legitimate, responsible, and ethical use of funds that are meant for the improvement of “helpful” research and treatment programs, advocacy, and most importantly — the children who are affected.