Without a doubt, the most asked questions and sought after information for any parent of an autistic child are related to the IEP: Individual Education Plan. In the United States it is the front line of autism treatment. Once a child reaches age 3 they are handed over to the school district and are eligible for Special Education under the federal law Individuals with Disabilities Education Act (IDEA). It is possibly the most under-funded mandate in the history of the universe with the exception of No Child Left Behind (NCLB). Okay, a bit of a hyperbole. Maybe.

Bottom line, insurance reform has been slow and quite limited, so your local school district is where you get services such as ABA, Speech, OT, Social Skills, etc... or perhaps not. For most parents their first time through the process is so foreign and confusing, that many go searching the web for any help. There are tons of resources on the web that are much better than me describing the state and federal laws and even local resources for IEPs, so I'm not going to talk about the mechanics and legal aspects, but share a little of my experience and philosophy.

( IEPs can be hell, but they can be productive. )

"Ask not what your country can do for you - ask what you can do for your country."

This is one the most moving and well known quotes from President John F. Kennedy's Inauguration Speech. It is often employed when a speaker wants to invoke feelings of patriotism or volunteerism. I'm pulling 'a Kennedy' to appeal to the latter.

Today is World Autism Awareness Day. You may be seeing tons of Autism Awreness posts flood your Facebook and blue lights all over your city. Every year on this day (or for April as Autism Awareness Month), I try to write something in my blog that is more than just commentary, sharing, or even editorial. I endeavor to post something 'useful' to families struggling with an Autism diagnosis. Today I'm addressing everyone else with what I feel might be useful to people and families with autism in their lives.



A few weeks ago, I was pondering what I'd write about this year for Autism Awareness, when I heard about a woman living less than 10 miles away commit suicide as well as end the life of her adult son with Autism. She had been suffering the unrequited battle of full time care for someone extremely low functioning and (from the news articles I can summise), fell into suicidal depression. How horrible and tragic. She was on a very long waiting list to receive some support for her son, who had 'aged' out of the school system.

What if... an awful game to play... but what if, she had had some additional support? A break in being a 24 hour nurse and caretaker? Someone for her to get emotional support from. The fact is that this tragedy will become an epidemic if something is not done soon.

I've mentioned my deepest fear for the future in this blog before. These approximately 1 in 100 individuals are going to become adults. The statistics vary but the estimate is that 75-85% of adults with autism are not fully independent. They rely on family and social services for support. With the birth decline in America, think about the fact that there is going to be ~1% of the working age population that will not be contributing much (if anything at all) to Social Security, yearly tax intake, and economy stimulating spending. People have been urging governments to see this as a crippling epidemic, and yet government and private spending still does not represent the per capita diagnosis compared with other medical issues.

These adults will need support and currently our government does not have the money alotted, nor the infrastructure to implement.

But I believe it is not all about the government, nor private spending.

"Ask not what your country can do for you - ask what you can do for your country."

A lot of people will think of volunteerism and associate that with JFK's creation of the Peace Corps. He saw countries around the world without roads, clean water, the basic neccessities of life. He created the organization based on volunteerism and it has endeavored through the decades to do good.

It is time for the creating of an American based volunteer corps to address the immense need for help with autistic adults, but also include in that any developmental or physical disability. We need a large scale organized national voluteer network. One where people can voluteer locally part time or even travel to an area of need and voluteer part time or full time. An organization that trains and implements support systems for teaching, training, and yes, basic lifeskills support for adults with disabilities. The Friend Corps? The America Corps? Whatever politician that wants to come up with an acronym and claim they invented it, I'm all for it, as long as they establish something that can fill this Grand Canyon sized chasm that is forming in America (and hopefully nations around the world can follow suit).

Awareness must lead to action.

"Ask not what your country can do for you - ask what you can do for your country."

It's time, because we are almost out of time.

Please share/link to this post, if you've liked what I've had to say.

Ethan is back from Walden West Science School. He spent 5 days and 4 nights away from home in an overnight camp setting with his entire 5th grade class (~110 kids) and teachers. Whenever he's been asked what he wants to be when he grows up, he's pretty consistently said, 'superhero.' He's certainly my superhero. I'm so proud of him.

He was a bit weepy when I went to the camp this morning to pick up luggage (the kids go on the bus and a few dozen parents drive all the luggage and sleeping bags). He said that he missed us and was homesick. I gave him a good few minutes of hugging and he calmed down and rejoined the group. His aide (who I'm very thankful went along on the trip) said that he'd had a great week and only got weepy this morning and that many of the kids were. I'm guessing it's a sort of emotional download now that the week was done and they knew they were at the end.

Apparently, Ethan had a few moments of anxiety or breakdown, but for the most part took things in stride, participated in everything, and handled the schedule, not to mention the cooler wet weather we had this week.

He made a handwritten schedule every day to help him with his need for schedule and we did a few weeks of preparation letting him know what would happen, what the food options would be, how they worked the showers and changing (in bathing suits -we practiced that), where to put his clothes and belongings, and who he could go/where he could go if he needed help or a break. I think all the advanced prep definitely made things go smoothly.

The science school program gets high marks from all past families in that it provides that first opportunity to be independent and away from home as well as learn in a new environment. Ethan gave me lots of hugs when we got home and a full run down of the schedule each day, of course including all the items that were served at each meal and what he ate and didn't eat. He enjoyed the hikes, stories, and all the gatherings. The had an indoor gathering in the dining hall instead of a campfire due to weather, and he thought the joke that they didn't have an indoor campfire because it would burn down the dining room was rather funny (ha ha). He liked his cabin leader and field instructor. He didn't take too many photos, but 2 really kind of made me smile.

Poison Ivy


and Scorpion (that one's in captivity)



Yes, very important to take photos of things you're not supposed to touch.

I'm so glad to have him back home, but so so happy that he was able to go on the trip and have the experience and a taste of independence.

...goes to hug him some more.

Watching your children grow and develop is much like a roller coaster ride. It has it's ups and downs and is absolutely exciting and terrifying at the same time.

Next week Ethan will be away from home for 5 days/4 nights for the first time. He's slept over a friend's house for a night before, but never anything this long and substantial. It's an outdoor science school, set up like an overnight camp. It's a right of passage for our school district's 5th graders. It gets rave reviews. The past 2 years I've been sweating over whether or not Ethan would be able to go. Everyone goes (with the only exceptions ever being extreme behavioral issues). He's going and his 1:1 aide is as well. I don't believe they would have had enough supervision/coverage in case he needed some additional support. He's been extra emotional lately... well more correct is to say that his emotional regulation is non-existent and he's been feeling the affects for growing up. He's almost 11. We've been packing and prepping a lot. I'd call it extreme preparation and practice doing things on his own for this trip. I think he's ready.

For most kids the science school week is a fantastic opportunity to expand their independence in addition to learning in a natural environment. For Ethan, I think it will be doubly so. I'm so excited for him. I worry about him going (but feeling better now that the aide will be there) and I'm in total terror about middle school, but as a parent I have to let him go off on his own more. I need to let him cut his own meat and pour his own milk. Literally and figuratively. I'm trying to give him more responsibilites at home and let him work through his emotions on his own. It's difficult, possible more for me than him.

I'll post after next week on how the trip went.

A lot of things have been happening, but all seems to be in the middle. Yes, that's it, in the middle of a lot of things.

Ethan's been doing well in school and there currently they're reducing the hours direct aide (they're still on campus just in case) and taking some data on how he's doing. It's so important for middle school for him to be less aide dependent. Mostly it's his emotional regulation issues that seem to be the at the forefront of his ability to function independently.

We have an IEP coming up and I've been researching and preparing for different models for middle school full inclusion. Sadly, our school district doesn't have any inherent infrastructure, so that will need to be created and developed specifically for Ethan. They have almost zero support structure at the school. Try to imagine a middle school with 1,100+ students and 1 school psychologist part time just 2 days a week with a case load of ~60-80 students. Yep, that's all there is for non-special ed class students. Boggles. I boggle and try not to have a daily panic attack.

Aside from IEP land, we're also still in medication land. Ethan is still in the memantine study and has had some improvement in speech and self expression, but his emotional regulation is still non-existent. He has an upcoming outdoor science school (4 overnights) that the entire 5th grade traditionally participates in, so I don't want to change his meds before that, but after that we're going to start some new things. I'm so excited for him to participate in the week long program. It will be his first time away from home for more than just a 1 night sleepover at a friends house. It should be a great experience.

The plan is stop the memantine and assess what he's like without it. Then we'll look into SSRIs. From what I understand, the standard medical care is to start very low dose and titrate up. So it could be several months of adjustments to get to a clinically beneficial state. We'll see. He just can't live with they type of emotional distress and anxiety that he currently functions with. Actually, it's amazing how functional he is living with that kind of anxiety. It's a tribute to his personality and how much of a sweetheart he is. We're also planning to try oxytocin in a short term study and see if it has social skills benefits.

So up and coming this spring: IEP/middle school transition and Med changes.

I don't usually post links or reposts of autism news or studies, because there are barjillions of bloggers and sites out there on the web that do that (plus there are probably a dozen interesting articles a week published). However, today I am going to link to the latest Autism Speaks article: Strong Evidence that Melatonin Eases Autism-Associated Insomnia because it has been a long while since I talked about Ethan's experience with Melatonin. As always I put on the caveat that I'm not a physician and this in no way constitutes medical advice other than sharing personal experience and you should consult your own physician.

Back in May of 2009 ( small autismblog post here) we started reading up on Melatonin as a treatment for autism related sleep onset issues. We would put Ethan to bed with all the typical recommnedations of consistent bedtime, rituals, calming, etc. and he would still stay up talking to himself, playing in his mind and simply being awake in his bed anywhere from 1-3 hrs a night. It had been going on and getting worse for several years. We read several articles of small studies both in autistics, children, and adults about the successful and lack of side effects usage of Melatonin for sleep onset. We also read one study describing some preliminary testing that showed a high percentage of autistics with a Melatonin deficiency.

That's the thing about Melatonin. It's not a sleeping aide. It's a hormone involved in your body falling into sleep patterns. If you don't have a Melatonin deficiency, it's not going to help you. If your sleep onset is related to deficient Melatonin, well... The very first night we gave it to Ethan, he fell asleep in about 20 minutes. Now, 2 1/2 years later, he's taking 2mg nightly and falls asleep within 30 minutes of taking the Melatonin. We have seen no side affects and he starts each day well rested and chipper in the morning.

It's nice to see that clinicians and sponsors are pursuing more concrete research and trials regarding Melatonin, because there are many people worldwide without the easy access that we have in the US, and also, many many skeptics out there. It think the sleep issues associate with autism are an extremely important facet to pursue treatment and the fact that a very simple and safe treatment exists, but we need more data, and thus it's great to see some research funding going in that direction. I also do worry about the FDA sticking their little fingers into supplements and the long term easy availability and low cost in the US.

Of note, we still use the GNC 1mg sublingual (Ethan takes 2 per night) and have also on occasion (based on shopping habits) had to subsitute the Source Naturals 1mg sublinguals sold at Whole Foods without any issue. The GNC are a little bit smaller and easier/faster to melt away adn Ethan prefers the flavor as well.

Ethan finished up the first trimester of 5th grade and made 'Principal's Honor Roll' (all A's). We're incredibly proud of him. It was a great feat that perhaps only ~15% of the kids at his school make. Last year he had a mix of A's and B's and the honor roll comprises ~50% of the students. He works and tries so hard, so it was great to see his grades improve even more from a pretty good starting point. I do notice this next trimester getting harder in terms of reasoning and higher order thinking, but he's sticking with it. His emotional regulation is still pretty non-existent, so he can be reduced to tears rather quickly when frustrated by homework. I spent quite a bit of time with a very teary eyed boy trying to learn how to multiply decimals and understand the key motivations of European exploration of the Americas. The good news is, that he's able to recover after 5-10 minutes and make progress. The scary part is that he's not picking up a lot of the information in class, but has to be tutored by me at home, but I suppose it's that way with a fair amount of neurotypical kids.

It leads me to feel that he's doing his part, working hard and trying the 'new', but we're failing to help him with his emotional and social issues. It certainly isn't a lack of effort. We've taken him for several re-evaluations as well as enrolled him in clinical studies. When I say 'we', perhaps I mean society. The resources and options are still so limited for autism. There is so much we don't know and limitations on what is available, and sadly, a lot of quackery out there.

On the bright side, I see how far he's come and I feel optimistic that he will continue to develop and progress, even if it's at a rate below his peers.

We had a follow up visit for the memantine open label study yesterday. For certain, he is now on the full prescribed dosage of the drug. The evaluating psychologist had the same observations that I had. There appeared to be an increase in speech and self expression that seemed encouraging. However, she also confirmed the same observation that I had that there wasn't a change in social reciprocity, eye contact, or emotional regulation. The clinical hope is that improvement in the speech and expressive area can further lead to improvement in the social/emotional realm. It's enough for us to keep him on the medication for the time being and see what develops. We haven't seen any discernable side-effects.

Our biggest concern is his emotional regulation, stress, and anxiety. At some point we may need to start trying other pharmacological routes. To be honest, I'm not sure when that point will be, but middle school is looming out there like this great big haunted house with dark clouds over head (think Adams Family). It's eight months away, and frankly, I'm frightened. Big decisions to make in the next 3-4 months.

Ben 10 with little brother Red Ranger SPD

Very strange couple of weeks... Ethan wanted to be Ben 10 for Halloween, so I bought a green polo jacket on ebay and some white duck tape and Voila! Oh my he loves Ben 10 - we have more action figures than should be legally allowed. Sadly he got Strep for Halloween so his celebration was very limited. I did let him Trick or Treat for about 8 houses in our neigborhood with the stipulation that he wasn't allowed to touch anything (just hold his bag open). Poor thing. Missed the Halloween parade at school.

Also sad about the Strep is that Ethan started the open label study of the memantine. It's a low dose (they titrate up), but he was quite sick, so hard to tell what's up. If anything, the few days before he got sick, he seemed a bit chatty. Today he's starting a new pack with higher dosage, so we'll be watching carefully for changes. I know there's a lot of talk on website/discussion boards about off-label therapy.

For what it's worth, study enrollment enables much closer watch and objective evaluation vs. just trying it out with your doctor. I realize that for most people, that's not an option, but if you have a big hospital/university nearby, perhaps do a little digging and see what's going on in terms of studies. Right now, despite not having any concrete results, I think the experience of study participation has been really good for Ethan, and it's giving me insight into evaluating efficacy with a lot of comfort in terms of safety.

Ethan also finally go to purchase the Lego Millenium Falcon with his 'study money'. It's his biggest Lego project yet. He's quite excited and started it last night. My guess is that'll be at least 3-5 days more of work. He's recently become more interested in the original trilogy and it's been a lot of fun watching the movies with the kids. Ethan had been mostly interested in the Clone Wars tv show, but now is getting a full appreciation of the Star Wars Universe. I keep thinking of that joke from Big Bang Theory regarding watching in the release order vs. story order: "I prefer to let George Lucas disappoint me in the order he intended."


At the Fall Festival (I think the Strep was about to kick in)

Randomized double-blind is sort of the holy grail of drug clinical trials. There are definitely certain types of things that react to the placebo effect. Pain, for instance, you take a pill and think it will help your pain, and in many cases a sugar pill will because you believe it to be real medicine. For these autism studies, I think the blinding is actually more useful in clearing the way for unbiased perception of the evaluators. Looking for changes in behavior, eye contact, communication, expressiveness, etc. are relatively difficult to begin with. I can't imagine a true placebo effect, because how could someone on the spectrum know/understand what improved social, behavior, and communications skills will be.

Tomorrow is the BIG DAY: we 'unblind' the study. It's been 16 weeks and I've not seen significant change in Ethan, so I'm hoping we find out that he's on placebo or low dosage. In the event that I'm correct, he gets to start the real thing tomorrow and we begin again. If we find out that he's been on the drug, we can consider dosage or possible stopping and seeing if we see changes. There have been anecdotal reports that people have perceived no change, but then after coming off the drug, they perceive some sort of regression that leads them to want to try the drug again.

In a few months, I'm hoping the Oxytocin study will be enrolling and I'm hoping to try that for Ethan. There has been some compelling medical evidence that a fair percentage of high functioning people on the spectrum see improvement. We can also consider the standard of care (SSRI's to start) to help him with his anxiety.

So yeah, this study (and the other data collecting studies) have been very good life experiences for Ethan. There's a certain sense of maturity, responsibility, and even social experience he's gained in participation. That change, I do see in him. Improved eye contatct, speech, communication, or behavior, I do not. His anxiety is just as high as ever and his emotional regulation is pretty poor. I do see improvement with calming down after an anxiety attack, which I think is coming from practice and experience along with the behavioral intervention. I don't see decreased anxiety or incidence of anxiety attacks or emotional outbursts.

All that said, I kind of feel that we're where we were 6 months ago in terms of being at the point where medical intervention seems neccessary, unfortunately, time and circumstance doesn't always work out. I'm hoping that we can start fresh tomorrow and take what we've learned to move forward with drug intervention for Ethan. So yeah, the randomized double-blind portion was a bummer, but neccessary, and now we're at the end.

Fifth grade is quite exciting at our elementary. It is the last grade before leaving to go to middle school (don't get me started on that panic yet!) and if the kids choose, they can participate in safety patrol. Ethan was very excited to join. I suspect he's been looking forward to it for a few years. Despite Ethan's antisocial tendencies because of his autism, he actually has many social ones. He loves to participate in school functions. Whether it's the fall festival, skate night, back to school night, talent show, or a fundraiser dinner, he absolutely wants to participate and be a part of the community. So, nope, I wasn't surprised that he wants to do safety patrol, which includes 'greeting' parents and kids as they drop their kids off at the school in the morning. He's been doing a great job so far. I've heard from other parents that he's opened their car doors and greeted them with a very personal "good morning Mrs. so and so." Everyone thinks he's adorable. (duh) Here he is with his brother on the first day of school.



So far, fifth grade is going well. He likes his teacher and has many friends in his class. I notice him working so so so hard on his emotional regulation - trying to deep breathe and calm down after his anxiety peaks. I doubt anyone, including me, understands just how hard it is for him and just how much harder he has to work at it than your average neurotypical kid. Despite some anxiety outbursts, it seems as if he's happy and enjoying school.

His 'team' at school has changed significantly this year (new teacher, 2 new aides, and new school psych on the case) and they seem to be trying to work out the logistics and work on behavioral strategies as a team. I'm following very closely to see how things go and won't let things (mainly IEP compliance) slip through the cracks like they did last year. I like to give people the benefit of the doubt and space to problem solve on their own, but not to the detriment of my child, so micro-management it shall be for the time being.

As for the drug trial, I'm still convinced he's on the placebo and hopefully will hang in there for another 10 weeks until the study goes into open label. I've seen no change in his behavior, eye contact, social engagement, or communication pragmatics. At that point we can follow up with decision regarding any other meds if things aren't looking up in the anxiety camp either. As an aside, he's so responsible with taking his meds, doing the blood tests, interviews and other testing for the study. I'm quite proud of his ability to adapt, put up w/difficult and painful blood draws (young small veins), and take on responsibility. I have zero guilt with letting him spend his 'study money' on Hero Factory and Ben 10 toys.