The wheels of bureaucracy in motion.

Brad is now modestly ramped up on services. His schedule:

• Monday:
  9-10:15 Early Intervention playgroup (toddlers, an integrated program)
  3:15 - 5:15 Floortime with specialty provider
  
• Tuesday:
  8:45-9:45 Speech pathology
  
• Wednesday:
  9-10:15 Early Intervention playgroup
  3:15-5:15 Floortime with specialty provider
  
• Thursday:
  8:45-9:45 Floortime with speech pathologist
  10:00-11:00 Occupational Therapy
  3:15-5:15 Floortime with specialty provider
  
• Friday:
  3:30-4:30 Developmental specialist
  
  Total: 12.5 hours

So far, we're genuinely impressed with the Early Intervention services. In particular, Brad's speech pathologist, Robin, is a real angel. She comes twice a week, once for traditional speech pathology, and once for Floortime. Robin is formally trained in Floortime, and she genuinely embraces the child-led approach. All of her notes are really positive. She sees Brad's potential, and she does everything she can to tap into it. At a time when I'm looking for hope, she gives it to me.

The jury is still out on the specialty provider. Turns out the Floortime therapists are ABA therapists cross-trained in Floortime. I think in the normal course, they'd go to some one's house, perform an hour and a half of ABA, and maybe mix in a half hour of Floortime. So when I said "no ABA", they were a little stunned. And from what I can tell, their version of Floortime isn't truly child-directed. That's the bad news. The good news is that Brad's therapist, Sinead, is a real pro, and Brad seems to have taken to her already. And when she teaches him something, she does really drill it into him. For example, last week she taught him "I want", and now it's in high rotation in his verbal repetoire. (For better or worse.)

Hearing Loss

I saw Brad's pediatrician on Friday. It turns out the fluid in his ears is mild and, in all likelihood, very recent. So there's little likelihood that Brad's receptive/expressive language delay is caused by the fluid, rather than PDD. (I was hoping that the fluid had been there for 1+ year, in which case the hearing loss would cast doubt on the PDD diagnosis.)

I'm going to have a real dilemna if the fluid doesn't clear up on it's own. He may need surgery for tubes. Brad will be reexamined in 6 weeks.

Update

Brad had his hearing test today, finally. To my complete surprise, he has a hearing problem. The audiologist indicated that Brad has fluid in both ears.

The confusion continues...

Purpose

Through this journey I've embarked on, I've discovered many great internet sites covering autism, each with a clear voice and sense of purpose. To name a few:

• Autismville presents the parenting point of view, with an eye towards advocacy.
• Generation Rescue presents the biomed point of view. (No ambiguity or hand-wringing there!)
• And some of the best philosophical musings on the internet - about autism or otherwise - are by autistic bloggers. These blogs generally advocate (and illustrate!) neurodiversity.

So what's my purpose? I don't have a clarity of mission or purpose. I exist on the internet to express my confusion. I'm still not convinced my son's diagnosis is accurate, and if it is, whether it will stick. It will probably be another year before I fully accept the diagnosis.

Nevertheless, I have made progress on my journey. My thoughts on the topic have evolved. I used to think Brad was just a "late talker." However, I've come to discover that "late talker" is just NT-denial-speak for high functioning autistic. And I've discovered neurodiversity, a movement that may well touch my son's life, and a concept I find myself embracing.

Report from Late Talker Group

I've been a member of the late talker group for a few weeks now. The syllogism that provides the foundation for the group philosophy is: (i) autistic children are generally retarded and know little about human nature; (ii) their children are intelligent and relate to humans; (iii) therefore, their children aren't autistic. The group counsels its members on how to dodge the diagnosis, likening the push to diagnose and diagnose early as a witch-hunt.

I categorically reject the syllogism. As neuroscience is beginning to demonstrate and as high functioning autistics have been blogging, individuals with ASDs are often much more intelligent than people give them credit for. Tests that rely heavily on language don't sufficiently measure their intellectual capabilities.

That having been said, I'm not sure that there's any harm in the late talker group. The parents hold their children in high regard intellectually, in spite of their developmental delays. Are the children handicapped by their parents' insistence that they're not autistic? My sense is they're not. The late talker group advocates Floortime and other "naturalistic" methods of teaching language. So while I disagree with the philosophy, I think the end result is generally positive.

Update: In the spirit of peace, I've deleted the portions of this post.

Update #2, January 14, 2010: I'm adding an update because I noticed an uptick in traffic for search terms like "late talker and denial". I originally authored this post almost two years ago. Here's what I think now: The line between autistic and not autistic is blurry at best; science has yet to explicate what autism actually is. A parent should be able to contemplate that their child is autistic without being castigated, or worse yet, being met with a chorus of "don't give up". Autism is not a scarlet letter. It refers to neurological difference that impairs communication and social skill. In many cases, it also engenders strength and talent. As for the group, dodging doctors and getting mad at the world for observing the obvious is not healthy. Nor is relying upon groupthink (with strong censorship) for medical advice. And speaking of censorship, the lack of a tolerance of criticism or even diversity of ideas is a clear indication of how weak their own ideas are. Strong ideas can withstand scrutiny. Theirs cannot.

Hello...

This blog is Laura’s brainchild and I want to keep it as/in her voice. But she did invite me (I’m Brad’s dad – Laura’s husband - btw) to write something from time to time, so here goes.

I haven’t reacted to Brad’s diagnosis like Laura, mostly because I honestly felt it coming. Finally hearing it was sad and disappointing, but really not all that shocking to me. Plus, Brad seems happy for now, and what else can you wish for in a 2 year old? I love Brad unconditionally – that was one of the first promises I made to myself when I became a dad. I hope that he goes off the spectrum eventually, but I’m prepared to accept it if he doesn’t.

I applaud those like Laura who have chosen to use cyberspace to provide a candid voice and share their experiences, since for now it seems like people who turn the Internet on a quest to find solace and answers instead all too often encounter anger and those either with an agenda or who are in search of someone to blame. I can’t even pretend to be experiencing the autism-related hardships that some people are, but still I wonder what’s going through their heads. Perhaps they’re frustrated by not having answers or overwhelmed by having to tend to the needs of their dependent kids and the prospect of doing so for many, many years to come? It seems like they’re more angry and vocal than those who were proven to have developed lung cancer due to smoking or asbestos exposure. Maybe somehow knowing the cause of something for sure makes the news easier to bear, whereas the uncertainty leads to curiosity, then to speculation and ultimately to unsupported conclusions. I also think the anonymity of the internet is a contributing factor, since it magnifies emotions and fuels fires like these.

At some point I think there will be a breakthrough relating to autism that will provide hope where there previously was none, but I see that happening, if at all, in spite of, not due to the actions of the zealots of today.

"Recovery"

Every faction in the autism blogosphere seems to have a different theory of recovery:

Biomed. Click here or here or here to read about biomed-based "recovery" stories.

ABA. The Autism Sourcebook, one of my ill-advised purchases, was authored by a parent whose son was supposedly recovered through ABA.

Floortime. Not to be outdone, Greenspan and Wieder claim that their methods caused an autistic group to become indistinguishable from a nonautistic group. (Greenspan/Wieder don't use the "rcovery" label, but the implication is the same.) In their study of 200 children with ASDs, 20 moved off the spectrum. See: Appendix A to Engaging Autism (p. 384).

Autism Speaks/Parent Advocacy. Advocacy groups don't acknowledge recovery because doing so is at odds with their purpose - to raise money for research and services.

So what's the truth? This blogger believes in spontaneous recovery. Some autistic children simply grow out of the diagnosis. In support of this theory is this 2006 peer-reviewed study, in which 19% of children diagnosed with PDD at age 2 were "off the spectrum" within a year. The children in the study weren't undergoing any specific protocol. For all we know, they were binging on gluten and casein. (Gasp!) So the subjects of the recovery stories heralded by each of the respective factions listed above were statistically likely to recover, with or without the therapy, be it biomed, ABA or floortime.

That's right. 19% of those diagnosed with PDD-NOS recover or lose the diagnosis. That's huge! So where's the scholarship? Where are the headlines?

Answer: there are none. Because recognizing spontaneous recovery doesn't serve the goals of any of the factions. Assuming the 19% figure is accurate, this means that almost one in five of those diagnosed at age 2 don't need the expensive services that are being pushed on them. Plus, fear sells. Spontaneous recovery doesn't even register on the autism scary-meter. Major media outlets couldn't care less.