About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Friday, February 6, 2009

What is autism?

What is autism?

The parenting community, the autism community, the neurodiversity community, the medical community, the scientific community - each has its own answer. A few of those answers are listed below, in descending order, from progressive to regressive:

(1) An identity, inseparable from the person.

(2) A neurological condition.

(3) A neurological disorder.

(4) A psychological disorder.

(5) A spectrum.

(6) Not a spectrum; a disabling disorder.

(7) Mercury poisoning.

Indeed, the metaphysical confusion (what is autism) was front and center when Brad was first flagged for autism; the ambiguity manifested itself in the diagnostics. I could choose from a litany of specialists, including developmental pediatricians, neurologists and psychologists. We settled on a developmental pediatrican, at the advice of Early Intervention.

If you had asked me "what is autism?" at that time, I would have chosen (6) - not a spectrum; a disabling disorder. Not because I had considered the issue and drawn a conclusion, but rather because everything I knew about autism I learned from mainstream media - AutismSpeaks outreach and Rain Man.

Over time, I learned more about autism, and today, I'm somewhere between (3) and (2) - a neurological disorder to some extent and a neurological condition to a different extent. I reject (1) because I regard autism itself as extrinsic to self, in the metaphysical sense, at least ab initio, at birth.

Another change: at the start of my journey, I was obsessed with finding a differential diagnosis. My child isn't autistic because he's [fill in the blank]. I started with "late talker"/Einstein Syndrome, and then moved onto Sensory Processing Disorder and Dyspraxia. Today, I embrace the idea of the autistic spectrum, and as a corrolary I've abandoned my quest for a differential diagnosis, which I regard as arbitrary at this point.

That having been said, the notions of bright lines and a differential diagnosis are useful with respect to allocation of resources. The service spigot shouldn't be turned on for the whole lot. This is where the politics should catch up to the science and the diagnostics. There should be a fair way to distribute resources. However, creating a fiction that there isn't a spectrum is not the answer.

In the last analysis, I believe that most autism debates, including those that have taken place on my blog, can be attributed to a fundamental difference in regards to the basic metaphysical question.

What is autism to you?

12 comments:

Quirky Mom said...

Autism to me is a syndrome -- a characteristically recognizable collection or traits or features that occur together. The traits that make up this syndrome (as with nearly any human trait, IME) occur on a spectrum. When a person possesses many of the traits at or near a certain end of the spectrum... you get autism.

Of course if you zoom in on the end of the spectrum that is autism, you'll see the range of traits within that end of it -- the clinically significant end of it.

Nyx said...

Thank you so much for this blog. My son was diagnosed with PDD-NOS 2 weeks ago and I am still really, really confused and lost. I don't know what to do or even how to figure out what to do. Your blog has been really helpful. If there is anything else you can recommend to kind of get me started, I really would appreciate it. I don't know how to learn all this stuff or how to find therapists, etc. I am ... overwhelmed to say the least.

Nyx said...

PS -- I have been reading "The Mislabeled Child," which has been helpful to me. I saw that you have read a lot of other books. Have you read this one and did you find it helpful? Are there other books that you would recommend? Sorry for the double-post.

Laura said...

Quirky Mom, leave it to the scientist to explain it the best.

Nyx, hi and welcome. I think its great that you're reading the Mislabeled Child. I'm sure I'd agree with parts of it. (Why are so many kids on drugs???) Skepticism will serve you well.

As for resources, I recommend the 60 minutes DVD I link to in the side bar. It has some very compelling video images of "typical" and "atypical" toddlers, and does a good job of illustrating the difference, and the extent to which that difference is very subtle. It also covers mainstream treatments.

Also, as a very basic resource, I recommend the American Academy of Pediatrics pamphlet "Understanding Autism Spectrum Disorders." See link:

https://www.nfaap.org/netforum/eweb/DynamicPage.aspx?webcode=aapbks_productdetail&key=5852d055-e054-4262-a79b-57a8b839b0c8

Beyond that, it depends on your child's profile. Some start out as PDD, but then either lose the dx or are reclassified as SPD or DCD (dyspraxia). To learn more about sensory processing, I highly recommend The Out of Sync Child.

Similarly, some start out as PDD, and then become reclassified as Asperger's. For a good asperger's read, I recommend Look Me In The Eye.

Last, some start out as PDD, and then become reclassified as classic autism. For classic autism, I recommend Thinking in Pictures.

Confused yet? Join the club. :-)

I hope that helps...best wishes.

A little boy just 2 years old said...

**Nyx**
The beginning of my blog - http://notjustlabeled.blogspot.com may hold some significance to you - in light of confusion. Go back to the first post and go from there. I also have a section on the right column 'Newly Diagnosed?' Go to those links as well.

My son was diagnosed about 9 months ago, so if you have any questions.. please comment on my blog and I will talk to you further. Also, I find the online group - http://community.thebump.com/cs/ks/forums/4613291/ShowForum.aspx
Extremely helpful. Most people on that forum either have a child with special needs, are related, or are a therapist. Whenever you are confused, you can go there and ask a question. It's not professional advice, but real people experiencing the same emotions, thoughts, confusions as yourself.

A little boy just 2 years old said...

Laura, Thanks so much for your last few posts! GREAT READS & I am SOOOO happy Brad is in a great classroom! They certainly do more than I can around here - or ever thought to. I am getting nervous about our choices. They are telling me our choice (1 choice) will be due to location. I will be armed with as much info on local preschool resources as possible. We'll see what happens.

Laura said...

Thanks and good luck. Given E's budding play and language skills, I hope he gets into an integrated program. Sounds like you're already looking into advocacy...go mama!

Nyx said...

Thank you for all the help! You mentioned how some things depend on the child's profile and suggest that the diagnosis may change as he gets older. Is there anything out there to help me connect those dots? I have noticed how it seems like there are all these very different traits that different children with PDD-NOS have, but I guess there are no subcategories? Is it just too early to tell where they will be a year from now or are there any general things that have been noted (by anyone, anywhere)?

Laura said...

Nyx, good questions. A lot of doctors will tell you you CAN'T tell at a young age whether the child will grow out of it - I asked Brad's first doc this question, and she refused to speculate on the grounds that she's often wrong when she makes private predictions. She went on to say that children who seem mild at age 2 may go "grow into" symptoms and children who seem severely affected may go on to lose the dx.

I actually think she's wrong. One of the studies indicates that strength in the social domain is a predictive factor. I believe the study.

I would look for things like gestural communication, imitation, following a point, joint attention, etc.

Brad has pluses and minuses in the social domain. He struggles to process social cues. But he's interested in things that interest me (i.e. joint attention). So if I point to something, and say "look Brad", he'll probably ignore me, not because he isn't interested, but because he can't process it. But if I say it three times, he'll look. That kind of sums of Brad in a nutshell, and I think it's illustrative of the social impairment (severe difficulty processing nonverbal social cues) coupled with the strength in the social domain (joint attention) that is predictive of a positive outcome.

Laura said...

Nyx, I meant to add: you should ask your doctor these things. I'm just a PDD mama, with no qualifications to opine on medical matters. I just offer up my thoughts as a mother, not a professional.

Nyx said...

I'd love to ask the doctor these things, but he won't talk to me until the next appointment because I have too many questions for a phone call, apparently. Meanwhile, he won't see me until we have an EEG done (which I requested). Meanwhile, we have thus far been unable to find anyone to do the EEG in less than 2 months, so here I am. My first visit with the doctor got me a lot of incredibly vague statements. Your son sounds A LOT like my son, and I can tell that you've done a lot of reading and thinking on your own, so I really value your opinion. I would love to hear more about how you understand what is actually going on behind some of the behaviors. My son will usually also look after several reminders, but ... not quite always. Sometimes it is incredibly hard to reach. Other times, he looks right away. This is a processing problem, you think? This is what I thought also, but I am confused about what is going on when I call his name and he doesn't look at me, because I can't get consistency there either. Sometimes he looks up right away. Othertimes, he eventually looks up. Sometimes he won't look up even when I touch him, and if I try to physically turn his head to look at me he resists. On these occasions, I could swear that it was purposeful, that he knew I wanted his attention and he just didn't want to give it. Still other times, I have said, "Look at Mommy." He didn't. but when I said, "Where's Mommy?" he suddenly turned, pointed to me with a grin and said, "Da!" But then went right back to what he was doing. Does your son do these things too? I want so desperately to understand what is going on inside his head. For a long time I never tried to wrench his attention away from what he seemed engrossed in because, well, it seemed rude. I mean, I get engrossed in things too and don't like to be interrupted. But ... OK, this is too long for a blog comment, I'm sorry. But I would love to hear whether you have these kinds of experiences and what your speculations/guesses are about what is actually happening. I have tried so hard to do attachment parenting and be responsive to him etc., but it is really, really hard when I can't figure out what he is thinking or feeling.

Laura said...

Same thing with Brad - he didn't/doesn't respond to name consistently. To the point where the Floortime therapist was graphing it and brought it to me as a source of concern. (Long story.)

As for calling it sensory processing, in terms of the way Brad takes in the world, he's a classic "sensory disregarder." This comes with a host of physical/OT traits, including low muscle tone. I blogged about this under the heading "ho hum." Another way to put it is: low state of arousal. A typical child's arousal level is, say, 5. A hypersensitive child's arousal level may be 7. Brad is a 3. It just takes a lot to get him going, physically, and a lot of stimulus to engage him (hence, you get ignored when you call his name). Anyway, I hope this helps, and feel free to comment away!