Tuesday, April 27, 2010

Upcoming Schedule

I want to let everyone know that the blog entries here will be somewhat less frequent and more erratically spaced throughout the remainder of 2010. Part of the slowdown can be chalked up to some blog fatigue and of course the ever present demands of parenthood and a full-time job. But the bigger reason is that I want to devote more time to a new project:

What I essentially am going to do is take a subset of these blog posts from the last two years, clean them up, add a few items to them, and reassemble the lot into a more cohesive, publishable-friendly format—probably something along the lines of what I did with Autistic Symphony. My expectation is to have the project completed by the end of the year.

Tuesday, April 13, 2010

ASAN's Reply to My Open Letter

I was tempted to leave the body of this post blank, but let me state more straightforwardly that ASAN has simply chosen not to reply to my open letter regarding the organization's honesty and integrity. That is of course ASAN's right, and nothing unusual need be inferred from its exercising of that right.

For me personally, however, the silence is disappointing. Keep in mind that ASAN, through regular email requests and at no prompting from me, frequently asks for my support, and keep in mind that I have been generally desirous of giving that support. ASAN has done good work in the past—for instance, its rallying of support against the Ransom Notes campaign. And the stated goals of ASAN are ones that, generally speaking, I believe would be beneficial for nearly all autistic individuals.

Nonetheless, I refuse to hold ASAN to any lesser standard than I would hold any other organization that asks for my support, and that includes standards of transparency, honesty and integrity. Speaking bluntly, I have never found ASAN to be a very transparent organization, and as I think this latest incident has demonstrated, ASAN appears to have some work ahead of it if it is going to meet consistently the principles of honesty and integrity.

Going forward, I remain willing to keep an open mind and a tentative eye for ASAN, but that organization needs to realize that if it is going to continue to ask for my support, then in return I am going to seek evidence that it is meeting the highest organizational standards. Lately, that evidence has been very difficult to find.

One final matter: political expediency. I have never myself heard directly from ASAN that it is willing to place political expediency above principles of accuracy and openness, but I have heard far too often from ASAN apologists that various forms of political expediency are at times necessary and valid tactics to be employed against the so-called opposing forces. To that line of reasoning, my reply is unqualified, and it goes like this:

What autistic individuals need more than anything is accurate information, along with acceptance, support and understanding based upon that information. Autistic individuals need accurate information more than they need treatments, more than they need funding, more than they need laws; for without accurate information, all those efforts would be pointless. What autistic individuals do not need is more political and personal expediency. Autistic individuals have suffered a long history of burden from organizations all too happy to practice political and personal expediency at the expense of accurate information—Autism Speaks, DAN, FEAT, Generation Rescue, ASA, the Judge Rotenberg Center—the list goes on and on. Thus it is important to state with unqualified clarity that autistic individuals do not need the burden of suffering from one more such organization—even if that organization happens to be run by autistic individuals.

Tuesday, April 6, 2010


On what I hope is a more productive note than my previous entry, I would like to draw attention to a series of posts being made on parenting over at Brett's Waste Blog. These posts generally highlight the value of celebrating what is unique in each child and of encouraging children to pursue individual interests and strengths—no matter how unusual those interests and strengths may seem. Such ideas should be applied to all children of course, but they are particularly important for autistic children, many of whom are not celebrated and not encouraged for being who they are.

One day, I hope to record a few thoughts and observations about my own son. I think I have held back so far simply because I do not have the rhetorical skills to do him justice, but what I can report today is that as he approaches his eighth birthday, he remains both obviously autistic and extraordinarily delightful. In many respects my son serves as the perfect counterexample to those who insist that only intense treatments and early intervention can help an autistic child progress; for having experienced none of these, my son has developed into an individual full of warmth, joy, skill and complexity, an individual with a unique and valuable perspective upon his world. I stand in complete awe of him, and I also stand aghast at the thought of anyone wishing for him to be any other way than the way he actually is.

It is my firm conviction that when we approach autistic children as medical problems in need of being fixed, we end up throwing away one of humanity's greatest treasures.