Progress Report, By the Numbers

Brad at 24 months
Per Early Intervention -

Receptive communication: 10 months
Expressive communication: 14 months

Brad at 31 months
Per Mullen Scales of Early Learning, administered by Brad's developmental pediatrician -

Receptive communication: 30 months
Expressive communication: 35 months

Bottom line
Receptive language: 20 months improvement over 7 months.
Expressive language: 21 months improvement over 7 months.

(Wow!)

Second Opinion: Lessons Learned

When a child is flagged for autism, the parents' reaction usually falls under one of two categories:

1) "I always knew something was wrong." These parents are panicked and want a diagnosis ASAP.

2) "What????" These parents are caught totally off guard. They just want to know if their child is actually autistic, a seemingly modest goal.

This post is for parents in the second category. If you just want to know if your child is autistic, learn from my research and my mistakes:

a) Don't accept the opinion of an administrator, early intervention or any semi-professional.

b) Seek out a developmental pediatrician. If you live in the sticks, and there are none near you, fly or drive to your closest metropolis.

c) If you get an appointment with a developmental pediatrician, by all means, make sure it's for a FORMAL EVALUATION. Brad's first evaluation was informal; it lasted one hour and did not involve a formal test, e.g. ADOS or CARS. I got the appointment without a wait; literally, she saw Brad the first business day after I called her office. His second opinion, which I blogged about here, was the real deal, and left me feeling confident in the diagnosis. A formal evaluation may take months to obtain, but it's worth the wait.

Feel free to share your stories below, and leave additional tips for parents seeking an evaluation.

Second Opinion: The Narrative

A Little Bit Autistic is feeling a little bit less autistic today.

On Friday, Brad was evaluated for a second opinion on his PDD-NOS diagnosis. Bottom line: still PDD-NOS, but the prognosis and plan for treatment are significantly changed.

Brad's evaluation lasted three hours. The developmental pediatrician is conducting a study relating to autistic spectrum disorders, the observation for which would be concurrent with Brad's evaluation. (I consented to the study in advance.) She administered two tests: Mullens and ADOS. In lay terms, Mullens is intended to measure Brad developmentally, but is not an "autism test" per se. ADOS is a standard test used to evaluate autism.

Thirty minutes into Mullens, the doctor offered an unsolicited remark: "I don't think this is PDD."

My jaw dropped. I was stunned. I didn't press her for clarification. I just sat in stunned silence.

During the ADOS test, Brad did well, but demonstrated PDD traits, e.g. mild aloofness and repetitive speech.

When all was said and done, the doctor told me that Brad has PDD, but just barely. One might even say he has the much-derided "checklist PDD" that we discussed in this thread, i.e. he meets the diagnostic criteria but perhaps lacks the essence of PDD. She told me that she won't include Brad in her study out of concern that he will "mess up the data." She added that his prognosis is good. It's extremely unlikely that PDD will be part of Brad's life long-term.

She added a novel observation: his fine motor skills and coordination are lagging for his age. She gave him two new diagnoses: hypotonia and lack of coordination. This was not entirely surprising, since Brad is in occupational therapy and his therapist had informed me of these issues. I just figured that they were part and parcel of PDD. The doctor seemed to indicate that his fine motor and coordination deficits go beyond the norm. FYI: Brad never missed a motor milestone when he was an infant. And to clarify, he eats fine with a spoon, and can thread a bead, so it's not like he's obviously or severely impaired.

Because of the motor/coordination issues, we're going to explore two possible neurological causes:

1) Mitochondrial disorder. This is best known as the metabolic disorder suffered by Hannah Poling, the subject of a controversial and highly-publicized government settlement. Brad is going to have a series of blood and urine tests. If anything comes up positive, then we get a referral for another doc.

2) Jaundice. Brad developed jaundice a few days after he was born. I don't know the levels, but it required him to undergo phototherapy, i.e. the "billi-lights". Apparently, severe jaundice can cause brain damage. However, I doubt there will be a connection because I believe Brad's billliruben was never dangerously high.

As for treatment, the doctor was very happy with the present composition of services. Her only recommendation was to add physical therapy to the roster to address the low muscle tone (hypotonia).

Motormouth of nonsense.

Sometimes Brad likes to say a word or a phrase, just because he likes the sound of it. He'll say it over and over again, laughing hysterically all the while. A sampling, in high rotation this week:

"Eat golfballs"

"Massachusetts"

"Pink lemonade"

"Dirty diaper"

Dog days of summer.

This video illustrates Brad's latest challenge.

Update

Bam! Overnight Brad developed a stutter. A significant stutter. So on top of being speech-delayed and scripting, now Brad's got a stutter to overcome.

I have no idea if it's temporary or permanent, or typical or related to autism.

To be continued...

Expressive speech update.

Brad has gone from putting two words together to phrases, and even a few sentences, including:

"I want that one."

"I like this song."

"Here you go, Jeremy."

He's still not understanding how to answer "yes" or "no".

Brad counting.

Update

• Brad is identifying colors consistently.
  
• He's mastered the shape sorter, although he does it entirely with his left hand.
  
• We've added 2 more hours per week of OT, bringing his total service hours to 14.5 per week.
  
• In the last week, his play has become more rigid. Also: he's flapping his arms and toe walking a little.

Out of nowhere...

...Brad counted to 10 this weekend. I had never heard him count to three before, much less 10. My husband and I were literally in disbelief. Yay Brad!

Update

• We retested Brad's hearing. The verdict: no hearing loss. The fluid in his ears is gone.
  
  
• Brad's speech continues to improve. He's labelling everything now, and putting two words together. But a new symptom is emerging: scripting. Brad has block letters that spell his full name "BRADLEY". I was holding the E, and it landed on his face. I said "I'm sorry" in a sing-songy voice. Now, every time he sees a capital E, he says "I'm sorry."
  
  
• Brad's SLP called in sick last week. The smackdown has been rescheduled to this Wednesday.

Update: The BE and the SLP had their tete a tete; no blood was drawn. The SLP remarked that the BE isn't administering Floortime, in the true sense. No surprise here. Status quo will continue because I'm not going to complain.

My journey.

A few posters have commented on this post, in which I expressed upset that my son would never be able to say "I love you."

The purpose of this blog is to provide a firsthand account of my journey. At the time, I believed the myth that autistic children are incapable of feeling or expressing love. In Engaging Autism, Dr. Greenspan dispels this myth. Of a group of parents he studied, Dr. Greenspan writes:

Almost all the parents tell us about wonderful, warm, intimate moments with their children at home, and say they would like more of these moments and wish their child could verabalize love and warmth. We show the parents how to create such moments by helping the child communicate his emotions more effectively.

(Props to Judith at Autismville for loaning me the book.)

Now a quick recap of where I've been and where I am - the stages of autism acceptance, if you will:

Stage One: Anger and denial
Stage Two: Emotional despair
Stage Three: Curiosity
Stage Four: Hope

Thomas Sowell argues that the mild autism diagnosis causes unnecessary alarm. I concede that the diagnosis was alarming and very scary. But it's only because the media and, sadly groups such as Autism Speaks, perpetuate the myth of Big Scary Autism. The answer shouldn't be to spare parents alarm by not diagnosing the children properly; the answer has to be to dispel the myth.

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.

Navigating the maze.

It's been almost a month since Brad was diagnosed. The developmental pediatrician who provided the diagnosis recommended 25 hours of service per week. Unfortunately, all of the service providers, except one, that serve my area are ABA providers who seek to "normalize" my son. Mind you, Brad presents with no - and I mean zero - behaviorial issues now. But the ethic seems to be that he needs behavioral conditioning.

I've decided to buck the system and go with floortime (child-directed) rather than ABA. Unfortunately, there's only one provider that serves my town. After stalking them for two weeks - they literally don't return calls - I finally got through. I'm getting a referral next week. Not sure when services will start. And the jury is out on the quality of these services.

To be continued...

RIP PDD-SOS

To reflect my current mood, I decided to change the name of my blog from "PDD-SOS" to "A Little Bit Autistic."

Breaking...

Brad's speech is starting to take off. He has more single words than I can count, including words for each of his foods and books. Also, he uses the verbs "open", "help" and "go."

And he even said "mama" yesterday. Not spontaneously, but after I coached him. I'm still waiting for him to say "mama" spontaneously. I won't say that my feelings aren't hurt that Brad asks for his trains by name ("Thomas" and "Percy") spontaneously, but not "mama".

Brad at 24 months.