A view of autism from along the spectrum

There must be an election in our future. I keep hearing people utter the phrase “I experimented with drugs in my youth”. The only time someone says that is when someone is running for office. We’ve been doing our own experimenting with drugs. Perhaps MJ will run for office one day and he can utter the same phrase.

I am thankful for medications that help MJ and, at the same time, afraid of them. They can work miracles and they can also cause harm. Neither the benefits or risks are ever clear. Hence the need for experimentation.

The need for experimenting with medications is driven by the uniqueness of each individual’s physiology. It’s not possible to accurately predict how every person will react to a particular medication. We can get an idea, but the only way to know for sure is to try the medication. This is even more true for children than adults. Almost all neurological medications are considered “off label” when prescribed for children. The “off label” term alludes to the fact that it is being used for a purpose that is different than that for which it has been tested and approved (by the FDA, here in the US of A). There may be some studies available that involve children but there is rarely the level of research required for FDA approval.

That leaves parents facing some difficult decisions when considering use of such medications for their children. Nonetheless, I believe that medications can be helpful to some children with autism. I’m not advocating medication as a cure or as a one size fits all treatment. Instead, I’m going to share some of the strategies that my wife and I use in making our decisions regarding medication.

Our starting point is to be very specific in identifying what we want to accomplish with medication. It’s inappropriate to introduce medication to do something vague like “help with autism”. It’s a little better to identify a general need such as “help with mood regulation”. I feel much more comfortable when we can be more specific such as ‘help reduce incidents of impulsiveness that lead to safety problems’. I’d love to be even more specific and be able to identify the need as clearly as “help reduce the level of anxiety leads to impulsiveness and that is most apparent in the pre-bedtime hours”.

The next thing we do is research, which of course involves consultation with experienced professionals. I could write lots about this step but there are two items that I find critical for the next steps: 1) how quickly is the medication absorbed and 2) how long it stays in the body.

Regardless of what medication is used and the reasons for using it, I think it’s very important to use the lowest effective dose. This is more important with drugs that have side effects, but it’s a good approach to use for any medication. Of course, the lowest effective dose won’t be listed on the bottle and is likely to change over time based on lots of factors. It may go up and it may go down. The only way to know is to experiment.

It’s exactly this type of experimenting that we’ve been doing the past few months. MJ started at a new school last fall which dramatically reduced the external factors that caused problems for him. Once he settled in we knew that we’d be able to reduce some of the medications that have helped him through a very difficult year. Some of the experimenting was very simple, short, and very successful. We reduced the dosage of one of the medications he was on to almost zero over the course of a few weeks. The medication was fast acting, and it was very simple to monitor the changes.

The second experiment was also somewhat successful but much more difficult. Unfortunately, the only way to find the lowest effective dose is to reduce the dosage until it’s no longer effective. No longer effective. Three words with a potentially huge impact. After all, we’re using the medication for a reason and losing those benefits was very difficult for MJ. In this case, the challenge in finding the lowest effective dosage was due to this particular medication’s very slow absorption and dissipation rate. It was about 10 days after we dropped the dosage the last time when we knew we had reduced it too much. We then increased the dosage, but it took about another week for the level to get back up to where MJ needed it. We were fortunate that this period occurred when MJ was home on Christmas vacation so we were able to make a lot of additional accommodations for him. It was during the middle of this time that I took to writing bad poetry. Fortunately, MJ is doing better, and I’m no longer writing poetry.

It was incredibly difficult to see MJ go through the tough times that I knew I caused. I know it is better for him in the long run as we were able to reduce the dosage of the second medication by one third. It was still hard, for MJ, for me, and for the whole family.

We’ve also learned the hard way to conduct only one experiment at a time. This includes medication changes and other significant changes that may impact MJ. Introducing multiple changes makes it very difficult to identify cause and effect. An unfortunate combination of changes last year resulted in a hospital stay for MJ. We are much more careful with changes because of that incident.

We are always evaluating whether or not medication is effective. Sometimes, we’ll be very diligent about making written records. Other times we’re much less formal. Either way we’re always watching. We’re not always experimenting, but we’re always watching.

I’ll close with the usual disclaimers: I’m not a doctor or a pharmacist. Your mileage may vary.

A meltdown bursts upon the scene
With the fury of a winter gale
The angry wind and driving rain
Awaken tumult from the sea

I must abide this raging storm
That rocks this vessel we call home
I lash myself to the deck
And steer my ship into the wind

I do not fear the ocean’s squalls
This ship has weathered them before
I can outlast the angry wind
It’s time will quickly cease

Suddenly, the sun breaks through
And the wind begins to slow
The storm ends as quickly as it began
A gentle breeze returns

When MJ was an infant, he played the role of baby Jesus in the Christmas pageant at LJ’s school. It was pretty special event.

As I remember this pageant, I think about how important it is for me to always see God in my children. It’s easy to see Him when they are happy, creative, and playful. It’s harder when they are fighting or having a meltdown. I know He’s there and I need to remember to keep looking.

I also need to teach my children to see God in themselves. If I can do that, I’ve taught them something for a lifetime.

Merry Christmas

I can barely believe what I read tonight from my fellow bloggers.

My heart breaks. Again.

When the book meme was making it’s round on the autism blogs this past summer, one of the topics hit a nerve and stuck with me. The topic was “Name a book that changed your life”. I’ve read a lot of books but I couldn’t think of any that changed my life in a significant way. Still, I kept thinking back to the topic.

A few weeks ago, it hit me. There was a book that changed my life in a significant way. It shaped the way I look at the world and, more importantly, shaped the way I look at myself. After reading a very upbeat post that Kevin Leitch recently wrote, I knew I had to write about it.

The book is Man’s Search for Meaning by Victor Frankl. About 15 years ago, three people, referred me to the book, over the course of only six weeks. I had never heard of Frankl or the book before but the referrals were enough to send me to the library.

Victor Frankl was an Austrian neurologist and psychiatrist who was deported by the Nazis to a concentration camp. He spent the last several years of World War II in various camps. Fankl and others in his concentration camp were eventually liberated in April 1945.

Frankl’s book, Man’s Search for Meaning, is primarily based on his experience in the concentration camps. During this time, Frankl saw both the best and worst of mankind. And more importantly, he saw examples of each in both his captors and his fellow prisoners. Despite losing his freedom, his family, and nearly his life, he recognized that he still carried the most important freedom inside himself. Frankl wrote:

…everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way. (emphasis added)

I’d like to be able to write that I always use the freedom Frankl describes to choose attitudes that reflect my most fundamental beliefs. I don’t, but his ideas are always there as a goal. Through Frankl’s writings, and others that he influenced, I know that what happens within me has far more impact than anything that happens to me.

Another quote, which goes to the core of Frankl’s impact on me:

When we are no longer able to change a situation, . . . we are challenged to change ourselves.

I made the trip to NYC yesterday to attend the Autism and Advocacy conference that Jim Fisher organized at Fordham University. It was an incredibly uplifting day. Both the speakers and participants reached out to each other throughout the day and I felt a sense of community moving through the group as if it were contagious. It began before the conference as Jim struggled to move the community from one room to another to start the presentations. It continued long after the conference was over, even as the staff was breaking down tables at the reception. For me, it even extended to train back to Connecticut. It was the first time that I literally broke bread with friends on a commuter train. Looking back, I see how that symbolism was consistent with the rest of the day.

I’m thrilled that I was able to grow some relationships and start new ones. After meeting Kim and Sara earlier in the week, I am grateful for the opportunity to get to know them better. Sharing our experiences as parents helped us connect and exchanging Monty Python quips while dodging buses in the middle of 42nd street didn’t hurt either. I found out that Mike and I work in the same industry and share some common colleagues. I was also able to tell him how I saw my own son in Katie’s eyes. I had the chance to talk to Kassiane again and meet Scott who hails from my alma mater Penn State. I shared perspectives with Joe and wish I had the chance to talk with him more. I met Kristina and Jim, even if we could only talk for a brief time. There were others, and although I may not have learned or remembered their names, the sense of community was still there.

Some things that are contagious are good for us. Some even nurture us.

Jim and Kristina, thanks!

About two years ago we got an assistance dog, a golden retriever named Stitch, for MJ and SJ (see my last post for an explanation of the initials). A lot of people ask questions about Stitch, so here’s a post with all the details. I’ll cover our story, the reasons why we got Stitch, and how it’s working out. I’ll provide some other references at the end. Throughout the post, I’ll refer to Stitch as an “assistance” dog although others may use the terms “therapy” or “companion” dog. Any of these could apply to Stitch. This post will probably get a little long. You’ve been warned!

How It Started
About three years ago, my wife attended a workshop on autism put on by a the State Department of Education. She happened to sit near a teacher who worked in the autism program in our school district. They talked a lot and the teacher told my wife about an assistance dog that one of her students just got. My wife immediately took to the idea and began looking into the organization that placed the dog with the student.

My wife makes decisions easily, and it was probably that same night that she told me that she wanted to get an assistance dog for our boys. My first thought was “What a crazy idea. How could a dog be of any assistance to someone on the autism spectrum.” My second thought was “This is just another angle to overcome my resistance to getting a dog”. You should know that we’ve been married long enough for me to know better than to say my first or second thoughts out loud. I don’t remember what I said, but I’m sure that I expressed my doubts about the benefits and the additional work of having a dog. The boys were both diagnosed within the previous year and this seemed like the time to simplify, not complicate our lives.

My wife continued doing her research and within a week or so she had a printed information and video tape from the foundation the teacher mentioned. She read the material, watched the video and I could tell that her desire to get a dog for the boys was growing. I reluctantly sat down one evening to read the material. Within 10 minutes, I was convinced that we should get a dog. It was clear to me that the woman who ran the foundation knew autism and knew dogs. Her view of autism was very holistic and very focused on the needs of the autistic person. Her knowledge of dogs was extensive and included training, breeding, and placements for children with disabilities. She was not presenting a dog as either an intervention or a cure. I still find it hard to describe the perspective that I had as I read the materials and watched the tape. I remember knowing, almost intuitively, that this was a good thing, a really good thing. There was aboslutely no downside, other than some additional work and the cost. It simply felt right.

The Reasons Why
During our initial discussions, the foundation director encouraged us to think through our reasons for wanting a dog. We set out three objectives for an assistance dog:

• Help MJ calm down when he became frustrated, had a meltdown, or was anxious or agitated for any reason.
• Be a bridge to other children socially. Dogs often draw children and we hoped that the boys would benefit from increased opportunity for social interaction.
• Help us find SJ when he ‘disappeared’. When he was younger, SJ would sometimes leave the house when we weren’t looking (We quickly installed hooks on the screen doors, out of his reach). While that stopped, he would still sometimes isolate himself and not respond when called. We would eventually find him, contentedly sitting in the bottom of a closed closet, under a bed, behind some furniture, in the garage, or somewhere similar. We had been through enough panic that the idea of a dog to help find him sounded great.

How It Worked Out
To be objective, I’ll compare how things worked out with our objectives and then describe some of the unexpected benefits and challenges.

• Help MJ calm down - This worked out better than we had hoped. MJ was excited about getting Stitch and the two connected from the start. Unfortunately for MJ, the frequency and intensity of his meltdowns, anxiety and agitation got much worse before it got better. Stitch is critical part in working through these crisis. When he’s upset, MJ will lie on the floor and hug Stitch . The benefit seems to be primarily due to his emotional connection to Stitch, but I suspect the tactile experience of touching Stitch is calming as well. There are now far fewer metltdowns, but there are periods where MJ just needs to be with Stitch.
• Be a social bridge - This did not turn out to be as much of a benefit as we had hoped. It has increased the quantity of social interaction, and has had an impact on the quality of interaction, but in a different way than we expected. It’s helped MJ become more articulate and clear spoken, but hasn’t really increased the connection with peers. There are times when Stitch helps the boys connect with peers but the benefit is strongest there are other connections as well. In hindsight, our objective here may have been somewhat misdirected. Expecting the nature of the interactions to change was not really appropriate.
• Find SJ - fortunately, by the time we got Stitch, about 15 months after our decision, the need for finding SJ had almost disappeared. Nonetheless, we did lots of training and practicing, with SJ intentionally hiding and my wife or I giving Stitch the command to “Find SJ”. He always did.

Unexpected Benefits and Challenges
Stitch received a good deal of training before we got him and we continued to work with a local trainer afterwards. MJ was very involved, attended all the classes, lead Stitch through most of the exercises and practiced at home. He was proud of his role in the training and he had the opportunity to enjoy satisfaction in his success. This was a huge benefit, and we used it as an opportunity to both celebrate and further develop MJ’s skills.

Stitch is definitely a social bridge for the family. Stitch gets lots of attention in public, especially when we are at an event centered around Autism. When Stitch spent some time with us at the ASA conference in Providence this summer, we rarely walked more than 30 feet without stopping for someone. There have been numerous opportunities in which everyone in the family has shared some extra attention because of Stitch.

While Stitch was very easy to train, he did like to leave the yard and roam the neighborhood. Neither the command “Come” or treats were enough to get him to return. This lead to a lot of frustration and quite a few back yard baths after Stitch rolled around the mud. We had to put up an “invisible fence” to keep him in the yard. MJ watched the training videos did almost all the training himself, under mom’s supervision. Stitch learned very quickly and has only left the yard once since we put up the fence.

I admit to feeling somewhat uncomfortable taking Stitch into public places that do not usually permit dogs. Stitch’s role is very different from that of a dog assisting someone with a physical disability, and it is rarely a necessity to have Stitch along with us. There is no visibile indications to others that the boys need any type of assistance, although Stitch does wear a ’saddle’ that says “Assistance Dog”. We don’t take Stitch to many public places and when we do, I’m always expecting someone to say, “You can’t bring the dog here.” It’s never happened to me but I’m still not completely comfortable having Stitch with us in some places.

Interstingly, as much as MJ is connected to Stitch, he does not want Stitch to sleep in his room. They cuddle before bedtime but, when it is time to go to sleep, Stitch has to leave. I think that it is completely a sensory issue for MJ. It’s certainly not a problem for us, but it was a surprise the first time MJ wanted Stitch to leave.

The bottom line is that I would do it again in a heartbeat. I did not grow up having dogs as pets, so I’m not necessarily enamored with having a dog as part of the family. Despite this, I recognize that Stitch has been an incredibly positive addition to the family. We are all better for it.

If You’re Thinking About a Dog
We got Stitch through the North Star Foundation. The director, Patty Dobbs Gross, recently wrote a book called The Golden Bridge: A Guide to Assistance Dogs for Children Challenged By Autism or Other Developmental Disabilities. I haven’t read it yet but I’ve been impressed with Patty’s knowledge and approach since I first read her materials. There are links to other organizations that place assistance dogs on the North Star site.

I’ll offer a little advice if your considering a dog. First, breeding is the single most important factor. Patty once said that breeding accounted for about 95% of the important characteristics of the dog. Second, make sure that your expectations for the dog, your capability for training, and the role of organization providing the dog are all in sync. There are a lot of different ideas about what an assistance dog is, how much they are trained, and what their role is. You need to make sure that you have the same expectations as the organization with which you work. It’s not necessarily the crazy idea that I initaly thought it was. Yes dear, you were right!

From now on, I will refer to the boys using nicknames. So far I’ve avoided using their names, even though I know that it’s still fairly easy to figure out who they are. My objective has always been simple: to keep their names from showing up on search engines with links to my blog. Using nicknames will enable me to meet that objective while not continuing to resort to cold descriptions such as “my middle son”. Carrie, Laura, and Ian’s comments to my last post were right on the money with their advice. Thanks for sharing it.

Unfortunately, we don’t consistently use any nicknames so I’ll have to make some up. Since all three boys have the middle initial “J”, I’ll use that as a starting point, but I won’t use their first initial, I’ll use a slightly different abbreviation.

So, I’d like to introduce the boys. LJ (for Large J) is my 20 year old NT son. He doesn’t live at home any more but he’s an important part of the family. MJ (for Medium J) is my 11 year old who was diagnosed with Asperger Syndrome shortly before his 7th birthday. It was his diagnosis that brought us into the world of autism. SJ (for Small J) is my 7 year old who was diagnosed with PDD-NOS at age 4. SJ was diagnosed 8 months after MJ, so by then we were experts (Shawn says with a grin!) I planned on using other letters for initials but realized that Large, Medium and Small is a lot easier for readers to put in context. I like to keep it simple.

Now, onto my next post. . .

It’s been a long break from blogging for me. There’s no big reason behind it, just a lot of little ones. Here’s a sample of my rambling thoughts from the past few weeks. Next, it’s time for me to catch up on my reading.

• When did our idea of the perfect educational setting become 20 students, all of the same age, placed in a room with one adult with a four year college degree? OK, so we vary the number of students and some teachers have advanced degrees. Still, it’s a pretty narrow model considering the diversity of learning styles people have. Why is this model considered ‘mainstream’?
• I hate the word ‘retard’. I mean, I really, really hate the word.
• There are not nearly enough child psychiatrists in central Connecticut. I expect other areas have the same problem. I can’t believe how often my wife and I hear of families that can’t find any child psychiatrists taking new patients.
• I built a PC for the first time last month. My 11 year old has wanted to build one for a long time. For his benefit, we bought a case with a see-thru side panel and blue LED lights for the inside. He loves making things and if it has lights, all the better. I can also now say that my kids use Linux.
• I want to figure out how to balance privacy with writing about my kids. Maybe nicknames would help. I’m getting tired of writing “my 11 year old” or “my 7 year old”. It sounds so cold.
• Anyone who says razing children with autism is a nightmare has never parented a neurotypical teenager. OK, it wasn’t a nightmare, but there were days when it felt like it. Fortunately, we all keep growing. As of last weekend, I am officially no longer the parent of a teenager. I am now the proud father of a mature and responsible 20 year old. It feels really good.
• In know one particular special education administrator who avoids taking responsibility for doing anything they don’t want to do. The only way to get something done is to put every request in writing. Without it, I can expect little but excuses. I get so tired of writing letters.
• For years, my wife and I have been taking the boys out for breakfast on Saturday mornings. We have a lot of reasons for doing this, one of which is that the local diner is a great place to practice social skills like eating politely, using inside voices and speaking clearly when ordering. My youngest doesn’t always speak clearly and will look at everything except the waitress when he orders. After observing this yesterday, I coached him to aim his voice at the waitress and I demonstrated by moving my hands back and forth between my mouth and the place where the waitress stands. I fully expect that next week when he orders, he will move his hands back and forth between his mouth and the waitress. He’ll probably still be facing somewhere else when he says “French Toast!”
• I received a brochure in the mail for an upcoming autism seminar. Instead of focusing on treating autism, the seminar is about the attitudes and beliefs of the people providing support. I have never come across a seminar with this type of focus. I’m glad to see the dialogue on autism become broad enough to support a seminar like this.
• There’s a lot of ’stuff’ on the internet vying for my attention: Email, RSS, Bogs, News sites, forums. I find it tough to filter it out. That’s one of the reasons for the long blogging break
• There are far too many issues with school transportation. I am stunned at the things that slip through the system. On the first day of school this year, two buses showed up to pick up my youngest and his classmates. We got a call from the van driver picking up my middle son. He asked to adjust pickup times and locations for several days. He called again at the end of the day and asked if we would meet him a mile away from the house because he was running late! Last year, my youngest was not dropped off at his correct bus stop for the first three days. We discussed all transportation arrangements at the PPT but when the bus showed up at the end of the first day and he wasn’t on it, the bus driver said he knew nothing about it, and didn’t know where my son was. The driver didn’t seem to care either. My son got off with a classmate a stop earlier. Yes, we panicked and almost went back to ’special’ transportation. Ugh!! There are too many people involved: the school, special educators, the district transportation staff, the busing company, the bus drivers. No one acts like they are responsible.
• It’s time to finish some of the posts that I have percolating.
• The leaves are changing colors in New England and we saw the first wave of ‘leaf peepers’ come through this weekend. I just love the change of seasons.

I was doing some work at home late last night when my wife said “You’ve been tagged.” For us “tag” is a code word meaning “You are now 100% responsible for the children.” I looked at her, thought about the fact that the kids were both in bed and asleep, and replied, “Uh, . . . OK.” She then smiled and said “You have no idea what I’m talking about do you?” I’ve learned that this is the type of question that can get you in trouble if you answer wrong, so I stalled for time and said, “Huh?” She then explained about Ian’s post.

Here we go:

1. I married the girl next door. OK, she was really the girl downstairs and we were in our twenties when I rented the apartment upstairs (from her dad, no less). I call this close enough to the ‘girl next door’. As I write this, I’m upstairs and she’s downstairs. We’ve long since moved but some things haven’t changed.
2. In the car, I only listen to AM talk radio and geeky podcasts. I listen to a lot of music but the only music radio station I’ve tuned into years is WMVY. Thanks to the internet I don’t have to to to Cape Cod to listen.
3. I taught myself to use biodfeedback / meditation to cure frequent cases of the hiccups. I figured that if Buddhist monks can do this to lower their heart rate I should be able to control spasms in my diaphragm. It worked the first time I tried it and has been near 100% effective. Since I’ve learned this technique, it only takes me about 30 seconds to rid myself of the hiccups and I don’t have to drink water upside down.
4. The last time my face was completely clean shaven was during Ronald Reagan’s first term as president. I sport the common goatee / moustache combination that is called a Van Dyck.
5. My license plate reads “PRRT-HD”. It was a gift from ‘the girl next door’ when I celebrated A Pirate Looks at Forty day. It came with an inflatable shark, a cheesburger, a margarita and a change in attitude.

I’m not going to tag anyone else, at least for now, because I’m behind in my blog reading and I don’t want to tag someone twice.