What every parent likes to hear: a year of progress

My son was diagnosed with PDD-NOS in August of 2009, so we've been on this journey for over a year now. When he first received speech and language therapy, they (of course) did an initial baseline assessment. We recently received the results of his one year assessment.

We know our son has made a ton of progress. We are incredibly proud of him. When you're down in the trenches, it can be difficult to see exactly how far you've come, though. Reading this assessment provided some incredible reassurance for us. 

Here are my favorite quotes (emphasis is mine):

He achieved an Auditory Comprehension standard score of 112, which places him in the 79th percentile and the high average range. He previously achieved a standard score of 71, which placed him in the 3rd percentile

He achieved an Expressive Communication standard score of 99, which places him in the 47th percentile and the average range. [...] He previously achieved a standard score of 79, which placed him in the 8th percentile and below average range. He demonstrates a discrepancy between his receptive and expressive scores. Children typically comprehend more language than they are able to express. This is a trend observed with typically developing children. It was not observed during his previous evaluation; although, he appears to currently be following a more typical developmental trend than he was a year ago.

He has acquired language and play skills at a record pace and responds well to a combination of direct teaching and play-based therapy sessions.

Overall, he has achieved excellent progress in treatment over the past year and has tolerated transitions between clinicians well. Prognosis continues to be excellent secondary to He's young age, strong parental support, and progress in treatment thus far.

 

So, his receptive language (always his weakness) has gone from the 3rd percentile to the 79th in one year. Expressive has gone from 8th to 47th. Of course, the problem is that he still struggles with communication, so now we have to figure out why. Given more processing time, he has more accurate results, so now we're looking into auditory processing disorders to see if that's something at play here.

 

Little buddy, I am so proud of you.

 

Mass House passes bill requiring insurance companies to cover autism treatment

What an incredibly novel idea. Your child is afflicted with a life-long neurological disorder. And your insurance company might actually cover the costs. Over here in Massachusetts, we're celebrating that yesterday the House passed a bill that would require insurance companies to do so. This is very exciting news for me personally, and I wonder how long it will take to actually become law. Starting in September, I'm one of many parents that is going to have to start paying $25,000+ annually if I want to give my child the treatment that research has shown leads to optimal outcome.

Dolores Mitchell is so incredibly sympathetic of families facing this:

“I worry about mandates that are added in a time of fiscal constraint and that are for relatively new treatment modalities,’’ said Dolores Mitchell, executive director of the Group Insurance Commission.

What opponents fail to realize is how many tax dollars will be wasted when these children do not get the services they need and end up needing assisted living for the rest of their lives. That adds up. Not to mention all the parents that need to file for bankruptcy just because they are trying to give their children the treatment they deserve.

But, you know, better to save a penny now. *sigh*

This is great news and a step in the right direction.

When the Belly is the Beast - Martha Herbert Presentation at Gottschall Autism Center in 2009

I've previously written about a conference I went to where Martha Herbert opened my eyes about the environmental science behind autism. When hunting around YouTube (which we parents so often do), I realized that entire talk was recorded. I didn't even know there were cameras there. So, here it is, split into multiple parts.

Actually, I see now that they were just posted three weeks ago. Enjoy!

A Healthy Brain In a Toxic World: The Impact of Environmental Toxins on Psychological and Neurological Health (Autism Society Conference)

A Healthy Brain In a Toxic World: The Impact of Environmental Toxins on Psychological and Neurological Health
Suruchi Chandra, M.D.

This session was part of the 2nd Annual Science Symposium, a completely separate track at the conference that ran in one room. It's really too bad the times of the sessions didn't sync up with the main conference program better. It was virtually impossible to attend sessions from both this track and the standard conference becuase of the overlapping start/stop times. But I did get to this one session.

The good news—it gave practical tips you could use to minimize exposure to toxic materials in your every day life.

The bad news—it scared the living crap out of me.

I need to start off by saying my wife is amazing. Before my son was born, she set off on this environmental toxicity kick. Nobody was doing this in 2007. She bought only BPA free bottles. She bought only pajamas free of flame retardant. She bought Seventh Generation cleaning products. Yet, our son still developed an autism spectrum disorder. I try to look at it another way—how much worse would he have had it if she hadn't taken all of these precautions?

Most people think of exposure to toxic substancesas a single acute exposure to something. In reality, the problem is the chronic, low-grade exposure of toxic materials over years or even decases. Over 80,000 chemicals are used in the United States, but only a few hundred have been tested for safety. The legislative action is mostly reactionary, meaning the public bears the burden of figuring out what is unhealthy. Through this approach, you get examples like lead paint.

Here are a few areas that Dr. Chandra covered and some precautions you can take to limit toxic exposure:

  • Pesticides
    • Designed to be toxic to living organisms, largely by interfering with nervous system function
    • Shoppers guide to pesticides -foodnews.org
    • Studies showing Parkinson's link to pesticides
    • Breast milk of vegetarian women contain lower levels of pesticides
    • Use orgainic, pesticide-free meat and dairy products
    • Don't let children play in areas sprayed with pesticides (especially recently sprayed)
  • Water
    • Only 91 contaminants are regulated by the Safe Drinking Water Act, but these regulations are not enforced.
    • Studies showing drugs are found in our water supply
      • Study run in 24 cities found antibiotics, painkillers, mood stabilizers, sex hormones, etc.
    • Bottled water contains same contaminants
      • Wal-Mart and Giant contain more contaminants
      • Tap water suppliers are actually held to stricter standards than bottled water suppliers
    • Drink filtered water
    • If you have to drink bottled water, spring water in glass water is best choice
    • Use BPA free or stainless steel containers
    • Environmental Water Guide - enter your zip code and get information
  • Aqua Sauna and Berkey make good quality, affordable filtration systems
    • Neither is perfect, but you can use them together
    • Aqua Sauna also makes a shower filter
    • Heat vaporizes toxins in shower, so they are inhaled and don't get dotixified in the liver
  • Indoor air pollution
    • VOCs can be higher indoors than outdoors
    • Regression can coincide with mold exposure
  • Cleaning agents
    • Natural cleaning agents tend to list everything in the bottle (though still not required to)
    • You can make your own cleaning agents (baking soda, vinegar, etc.)
  • Flame retardants
    • Used on kids' pajamas - use 100% cotton snug-fitting instead (or pajamas that clearly state no flame retardants)
    • Flame retardants on electronics - Environmental Working Group (EWG) has a list of PDBE-free companies
  • Plastics
    • avoid BPA and phthalates
    • avoid toys labeled "3" or PVC
    • avoid items labeled "7"
    • Don't heat plastics
    • Use wood or glass cutting boards
    • Use a cotton shower curtain
    • In tub, play wit cotton toys, not plastic
  • Cookware
    • Glass and ceramic
    • Stainless steel may be used occasionally (unless with acidic foods)
    • Iron/black cast iron is good
    • Avoid aluminum, teflon, other non-stick bookware
      • Heating teflon fills parrots' lungs with blood. That can't be healthy for children.
    • Aluminum also used to line some juice boxes
  • Toiletries
    • If you wouldn't eat it, don't put it on your skin
  • Electromagnetic fields
    • Are cell phones the new cigarettes? (GQ article)
    • Outstanding question: do EMFs cause certain symptoms (such as hyperactivity, fatigue, or anxiety) in susceptible children?
  • Interphone study
    • Link between "high use" of cell phone (which is just 30 minutes+ per day) and brain cancers
    • Turn off wireless router when not in use.
    • Unplug appliances near the child's bed
    • Don't sit too close to computer or TV set.
  • Cell phone
    • Use headset with an eartube
    • Don't use bluetooth
    • Use speakerphone function
    • Use cell phone for shorter conversations
    • EWG has cell phones with their EMF usage.
  • Gauss meter
    • Allows you to measure the low frequency EMFs.
    • Recommend 0.5 mG or less in living spaces
  • Don't be overwhelmed
    • Don't panic
    • Feel informed and empowered
    • Work on an area or two at a time
    • Takes time to make new habits
    • Talk to PTA about making school a healthier place (no pesticides, or better cleaning agents)

That's a lot to take in, huh? We're doing a lot of that, but some of it just makes you want to climb under the bed and hide. But Dr. Chandra tells to not be overwhelmed—instead feel informed and empowered. Work on an area or two at a time—it takes time to form new habits. Once you start, you can talk to your school's PTA or PTO about making the school a healthier place (no pesticides, safe cleaning agents, etc.).

Behavior Modification through the Use of a Service Dog (Autism Society Conference)

Behavior Modification through the Use of a Service Dog
Karen Shultz, B.S., Nursing and Sally Montrucchio, CPDT

As I mentioned in yesterday's post, we're going to be getting a service dog in the coming months. We're very excited about what the dog could bring to not only my son, but the entire family. Sally and Karen are from Tender Loving Canines Assistance Dogs, Inc. The folks at TLC themselves are not autism experts, but they have found that the transition from training dogs for established uses to autism is almost effortless. What are those established uses? Service dogs are commonly used for conditions such as seizure disorders and cerebral palsy, as well as developmental disorders. Now, TLC finds themselves placing dogs mostly for children with ASD and injured veterans returning from combat.

Often, the service dog is introduced for a specific reason, but there is a ripple effect that ends up improving many aspects of quality of life. Some of these initial reasons can include helping the child through seizures, helping with responsibility, or assisting communication. Here is an expanded list of skills the dogs are shown to improve:

  • Calming
    • The dog will interrupt, redirect or calm when the child experiences sensory overload.
  • Confidence
    • The dog will support a child to try new things, foster sense of courage and security to tackle activities once feared.
  • Friendship
    • The dog will help the child learn how to share, have empathy, etc.
  • Communication skills
    • The dog can be a target for communication skill efforts.
  • Motivator
    • The child becomes energized by modeling actions of the dog, interacting with the dog, or simply having the dog present.
  • Motor skills
    • The dog will assist in improving motor skills and increasing physical activity through games and tasks.
  • Responsibility
    • The child is tasked with the activities for maintaining the health and grooming upkeep of the dog.
  • Safety
    • The dog can interrupt an undesired behavior, redirect a behavior, and get help when necessary.
  • Social interaction
    • The dog is a positive attraction, something "special" only to them. Introducing the dog to others creates a sincere interaction from which new relationships can be sparked.

Why does this work? The research is limited and is still very much anecdotal, but it is because the dog doesn't hold expectations. They are willing and happy partners. This reduces stress for the child.

I found it interesting how much simple contact with the dog could help comfort and reassure a child. For example, when going to the dentist or doctor, simply having the dog resting against the leg of the child could lead to a huge decrease in anxiety and difference in behavior. Another good example was doctor visits. The doctor would "check" the dog first, so the child would know what to expect. Then the child's checkup went much more smoothly. It's too early to tell, but it seems our son might be positively responding to application of pressure—it's just a new observation we've made recently (he seems to like pressure on his shoulders, for example). He's always been a cuddler, so it is very possible.

Service dogs have been very useful as interruptors during meltdowns. A snuggle, a kiss, application of pressure, or even performing a trick can redirect the emotions during a meltdown. Another interesting example is that the dog was taught to lick during a meltdown, and the child was taught that when the dog licks him, he wants a hug. This also could change the course of the episode.

One of the biggest areas of skill development is responsibility. The child is in charge of the basic care of the dog, like the feeding and the grooming. In one example, the child cooks the dog an egg every morning. He had previously shown no other interest in the kitchen. In another example, the child brushes the dog's teeth, then brushes his own. There's also the responsibility that goes with advocating for the dog, such having the child himself tell someone like a security guard that it is a service dog and he can come into the building. The child also can also authorize who can interact with the dog (i.e. "can I pet your dog?").

And of course, there's the communication. The child gives the dog commands, which can be verbal or even start as hand signals. My son is verbal (though his language is still significantly delayed), but gesturing has always been a problem. We could focus on having him gesture "sit" and "come here" to the dog first. The hand gestures can evolve into better verbal communication as well and generalize towards other humans.

We've done a lot of service dog research, so much of this wasn't new. But I did pick up a good number of ideas of how we can approach interaction between my son and his new dong (who's coming soon!).

Opening Keynote: The Obama Administration's Efforts On Autism (Autism Society Conference)

Opening Keynote: The Obama Administration's Efforts On Autism
Kareem Dale and Sharon Lewis

The Autism Society was able to get two representatives from the Obama administration to speak at the opening keynote. Kareem Dale is the Associate Director, White House Office of Public Engagement & Special Assistant to the President for Disability Policy. Sharon Lewis is the Commissioner of the Administration on Developmental Disabilities.

Kareem, who is partially blind, coordinates Obama's efforts to ensure all people with disabilities are on level playing field. He said that inclusion, openness, and accessibility are all hallmarks of the administration. In June of 2009, the administration launched the Year of Community Living. This goal of this program was to ensure that people with disabilities can live where they choose, not warehoused in institutions. While the program has officially ended, additional funding has been secured to ensure collaboration between human services and housing organizations.

Honestly, there was a lot in this session that was way over my head (I'm new to worrying about policy concerns). I hope to do some research on the acts and associations that I jotted down and give you some more info in the future. But in the meantime, be sure to check out the brand new site healthcare.gov. The site is meant to help families navigate the changes in healthcare.

Just an interesting sidenote: During the Q&A session, Mr. Dale was asked a question by a young woman with autism. After his answer, she asked him to tell Obama that she is a big fan and would like to meet him someday. Mr. Dale asked where she is from and asked if she'd like to meet him in July. He set it up. Nice story.

Google SketchUp and Autism

I'm pretty tired, so I know I'm not going to get any of the session notes up tonight. But I thought I'd share something cool that I saw on the expo floor today at the Autism Society Conference. 

Google SketchUp is a 3D modeling software package. Members of the SketchUp product team began hearing from customers that their kids with ASD were totally into SketchUp. Because some kids on the spectrum are spatially and visually gifted, a (relatively) simple 3D modeling app turns out to be a great way to express their creativity. 

Check out the video above. It gives examples of four kids who took part in Project Spectrum—a Google program aimed towards getting SketchUp in the hands of creative kids with ASD.

Quality of life indicators for people with ASD

Here's the first, and probably the shortest, of my posts from the Autism Society Conference and Expo. Before the opening keynote, Autism Society CEO Lee Grossman put up a slide listing nine quality of life indicators for people with ASD. I figured I'd share the list:
  1. School inclusion
  2. Friendship/social connection
  3. Health and well-being
  4. Academic success
  5. Autonomy
  6. Supported and independent living
  7. Supported and independent employment
  8. Subjective well-being
  9. Recreation/Leisure

More to come as I make sense of my notes.

At the Autism Society Conference in Dallas

(download)

It's been quite a while since I've written, but I'd like to change that. I've picked as good a reason as any to start writing again—I'm at the Autism Society National Conference and Exposition today through Saturday. I want to take detailed notes while I'm here, so I might as well publish as I go. You know, live blogging.

If you're at the conference, leave a comment and we'll figure out a way to say hi. 

The entire conferences schedule is here. There are quite a few sessions I'm looking forward to, particularly:

Behavior Modification through the Use of a Service Dog
Karen Shultz, B.S., Nursing and Sally Montrucchio, CPDT

We're actually on a waiting list to get a service dog in the next few months. My little guy really likes my brother-in-law's dog, and we're confident that having his own dog will boost his social skills.

Environmental Health and Autism
Martha R. Herbert, Ph.D., M.D.

I've posted about Dr. Herbert before. Her research on autism as a whole body disorder was my introduction to the autism research world.

Developing Meaningful IEP Objectives: Evaluation to Implementation
Ruth Aspy, Ph.D., Barry G. Grossman, Ph.D. and Susan Jamieson, M.Ed.

My little guy just turned three, and the IEP process was a stressful one. I want to make sure we're getting the most out of his IEP objectives. We're already not particularly happy with the first draft, so this session will hopefully be of help.

No Easy Answers for Stereotypy: A Comprehensive Approach Promoting Functional Skills [BCBA Session] [ASHA Session] [Social Work Session] 
William H. Ahearn, Ph.D., BCBA

Sterotypy is a pretty big problem of late—particularly verbal scripting. We're not sure how to discourage it (or even why he feels he needs to do it). Hoping this will give us some coping skills.

Step-by-Step Instruction: How to Dissect Videos to Teach Social Skills [ASHA Session] [Social Work Session] 
Jennifer Jacobs, M.S., CCC-SLP

My (amazing) wife has been talking about making videos of model behavior for our little guy to watch. On the rare occasion he does get to watch a movie, it is something like Action Verbs (or, to him, "action birds") from the Teach2Talk series. While he's been scripting those movies more lately, he also is using proper verbs a heck of a lot more.

Fatherhood Forum: A Panel Discussing the Special Contributions and Needs of Fathers 
Robert A. Naseef, Ph.D.

I'm always interested to hear more from dads in this space. Between support groups and conferences, I don't get to see that many.

Dad's Workshop
Lee Grossman and James Ball, Ed.D., BCBA

Again, a dad workshop. This one is with Lee Grossman, the CEO of the Autism Society. As is the problem with conferences like these, this session runs opposite of some others I'd really like to attend. But I also hear great things about this panel.

How Much of Autism Can Be Explained by Active Chronic Problems and How Can This Framework Affect Clinical Practice? 
Martha R. Herbert, Ph.D., M.D.

I always look forward to hearing new information from Dr. Herbert.

So, I'll do my best to live blog the event (which starts in earnest tomorrow). I'll also try to live tweet from @asdnotes.

(Note about the photos: The first is of the Hyatt Regency, which is where the conference is held. The second is from the 28th floor of the glass elevator. A young girl told me I needed to check it out, so I did!)

A classic example of contradictory autism treatments (in the same article!)

Why is it so frustrating, as a parent of a child with ASD, to figure out what to do to help them? There are conflicting opinions EVERYWHERE about what works and what's a waste of time. Sometimes, like with this AP article titled Evidence lacking for special diets in autism, the article actually contradicts itself.

For example, here's the first paragraph:

CHICAGO – An expert panel says there's no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers.

And the second paragraph.

Painful digestive problems can trigger problem behavior in children with autism and should be treated medically, according to the panel's report published in the January issue of Pediatrics and released Monday.

Sigh.