Everything Autism

Different Wavelengths

2011-04-07T07:57:00.000-07:00

Ever notice how the people that should have a basic understanding of the limitations autism can place on a child's ability to navigate the outside world often do not?

I'm not talking about the "model parents" rolling their eyes and shaking their heads when your child is having a meltdown a the supermarket, or even the 70 year old cashier who sneers "Doesn't he talk?" after her aggressive attempts at getting a response to grandmotherly questions is ignored. I'm talking about the surprising number of people in the medical and nursing field that seem to at best have a limited understanding of what to expect from the patient with autism.

It usually starts with the person asking him a question that is beyond his ability to understand and respond to. I then typically answer the question for Owen. When the expectations continue to go beyond what can reasonably be expected and I see his stress level rising, I tell them he has autism. More often than not, I'm reminding them he has autism (he's a frequent flyer, and it's in the chart!) Yet after explaining it, the problems tends to persist. I've recently taken to providing a short explanation of the difficulties associated with autism with improved results at subsequent visits.

My explanation usually goes like this: He has autism and has difficulty understanding and responding to complex sentences or instructions. He prefers to have less direct interaction with strangers until he gets used to them.

I know this is one of those things I have to just accept as coming with the territory and hope my explanations lessen the issue over time, but man is it irritating.

A First "Joke"

2011-02-19T11:53:00.000-08:00

Children with autism tend to struggle with the concept of joking. A variety of factors may be involved including their tendency to interpret language in a literal and concrete manner. Another factor is the difficulty children with autism typically have in understanding the unspoken intentions of the other person (theory of mind).

Last week Owen learned his first joke. He really enjoys bringing me the balls from his ball pit to shoot into the small basketball hoop designed specifically for them. He has always been very stuck on colors; although I'm sure many of you know what I mean by "stuck," I'll explain. He frequently is compulsive about needing to label the color of nearly everything he comes into contact with. Often he is unable to continue playing until he brings the color to me or his mother and announces the color and we say the color as well. If we try to ignore him in the hopes that he will become unstuck, he will follow us around the house repeating the color until we give in and repeat the color.

Well anyway, he was going about one of these "compulsive color episodes" the other day with the balls from his ball pit. I decided to change it up a bit. Here is how it went:

Owen: "Red ball."
Me: "It's a green ball?" (With a silly smile on my face)
Owen: "It's a red ball"
Me: "I think it's a green ball?"
Owen: "It's a green ball." (Smiling as though he knows he just said something really funny)
Me: "Is it a green ball??"
Owen: "No"
Me: "What color is it?"
Owen: "It's a red ball."

At this point I wasn't real sure he had got the "joke." But he proved he got the joke by bringing me a purple ball and saying:

Owen: "Is it a yellow ball?" (smiling)
Me: "Yes, that is a yellow ball"
Owen: "No, it's a red ball."
Me: "NO what color is it?"(shaking my head and smiling)
Owen: "Purple!!!"

This game went on for a few more balls and the exchanges became increasingly more complex and lengthy. Then he took the joke to another level by bringing me a ball and saying "Is it a fish?". It has been about a week since first learning the joke and let's just say he doesn't quite know when to let a good joke rest. He has generalized the joke to just about every object in the house. Sometimes using the joke on the food items on his plate, sometimes pointing at mama and saying :"Is it Grampa?" or me and saying "Is it Lily" (Lily is our dog). Still, we aren't complaining because we see it as a nice stepping stone from the purely concrete definitions of things into the abstract.

The Reformed Snack Thief

2010-11-29T14:17:00.000-08:00

Owen was for several months a habitual snack "thief." He ate his snacks faster than his sister and would routinely take her snack (or at least attempt). In the case of a mixed snack, we would frequently catch him switching the less desirable items in his snack (typically the healthy stuff) with the more desirable items among his sister's snack.

Sharing and turn taking can be very difficult for children with autism, and Owen is no exception. I believe his difficulty with only eating his own snack stems from the same problem that makes sharing hard for him as well. However, it certainly isn't uncommon for any toddler to have trouble sharing, but I wouldn't expect most toddlers without autism to have as strong a reaction when their parents attempt to prevent them from taking their sibling or friend's snack.

Our attempts to interrupt and/or prevent Owen from taking his sister's snack were typically met with fierce and aggressive resistance. Sometimes the result was aggression towards mom and dad, sometimes toward his sister, and sometimes he would have a complete meltdown.

Well, I cannot say whether it was our attempts to change this behavior, the autism day treatment center's attempts, or just a natural change, but last week he made a remarkable change.

I had sort of noticed that snack time had been going better than usual for the last few weeks. Yet, it hadn't dawned on me why snack time was going so well. Now I realize the reason is that Owen hadn't been having meltdowns during snack. It wasn't until last Friday that I realized how big of a change he had made somewhere along the way.

Last Friday I gave goldfish crackers for snack. This is one of Owen's favorites, but not particularly well liked by his sister. Owen woofed down his crackers and said "more crackers." I noticed that his sister hadn't touched her snack and had left the table (she is about 22 months old). I decided that I might as well give Owen some of her crackers and slide about half of her pile in front of him. In retrospect this probably wasn't my best ideas since there was a good chance that she would be angry with me for giving away her new found "favorite" snack.

But Owen would have nothing to do with his sister's snack. He got up from his chair, slid the crackers back to his sister's pile, pointed in his special way at her pile (using all 5 fingers) and said: "Thea's snack."

He then walked back to his chair, sat down, looked me in the eye and said: "More snack please." I was dumbstruck and ran to the cupboard to grab him more crackers from the box.

I am happy to report that Friday was not a fluke. He continued to show no interest in his sister's snack throughout the weekend and snack time has been reclaimed as a time of fun and relaxation for all. It goes to show how sometimes you think a situation is beyond repair and suddenly your child makes a huge leap forward.

Functional Communication Improvements

2010-11-24T13:19:00.000-08:00

It isn't always easy to see progress, but when I think about it, Owen has progressed immensely from less than 2 months of autism day treatment. The program uses a combination of daily speech, OT, and Mental Health Therapies (floortime, RDI, and cognitive exercises). Here are some of the favorite phrases I hear Owen say at mostly contextually-appropriate times:

"I want [object]" frequently saying the color of the object in place of the actual object, but it is generally obvious what he is referring to.
"Owen's turn", and "my turn", sometimes even: "Daddy's turn."
"I'll try some"--at the dinner table
"Help"

These are huge advances for us and we really believe these phrases have drastically reduced his frustration at critical times. One of the techniques that seem to work for the staff is to begin with those words that are in our son's vocabulary and gradually use activities that build important phrases into his vocabulary using those areas of strength. For example, Owen has always been good at colors. The staff play games that force him to say "I want red." Although we have tried to force communication from him by delayed responding, the staff are far more talented at this.

In short, the staff are doing an excellent job and we have seen numerous other progressions in him since starting the program. I wish this program was available everywhere. They provide it all. In addition to the actual autism day treatment they also include as part of the program: family therapy, in home weekly visits designed to help the parents transfer the skills, parent education classes, and separate parent and sibling support groups. This is the sort of treatment every family with a child with autism should get.

Music and Meltdowns

2010-11-06T05:32:00.000-07:00

Music is very powerful for my son. Many of you would say you that you also can be profoundly affected emotionally and cognitively by hearing your favorite song. But, I would wager that if you were screaming at someone; hitting them; slamming your head into them; scratching at their face, your favorite song would probably not be the compelling force causing you to stop. Perhaps it would be the fear of the legal system or sense of morality that would fire those neurons responsible for quelling your emotions. For Owen, it is music.

When he was an infant, Carrie Underwood songs could stop his crying in seconds. Now, he listens to a "Silly Song With Larry" veggie tale song to calm down. He also really enjoys the "Bounce" series which were created by a music therapist specifically for children with communication disorders. It doesn't always work, nor do we always have it available, but the right song can truly work beautiful magic on meltdowns.

Music therapy has long been known to be a very effective therapy for helping children with autism learn and regulate their emotions. I imagine it is at least partly related to some of the auditory sensitivity that is so common in children with autism. Whatever the reason, music is a powerful force for Owen.

The Plight Of A Younger Sister

2010-11-05T13:30:00.000-07:00

Recently, Owen's younger sister has had some very concerning behaviors. She appears to have picked up on some of his less pleasant behaviors. She is about 21 months old and has always been among the most happy and interactive children I've known. Strangers often comment on how she lights up the room with her smiles and are often delighted with her interactive antics.

We have also, to be on the safe side, had her checked out by the early childhood intervention evaluators and an autism specialist. They all agree that she does not show signs of having autism. I agree with them except for the behaviors she has learned from Owen. I never thought my 21 month old daughter would be hitting and headbutting me (ever so softly) when she was angry at stopping a fun activity. Nor did I think she would hit her head into the floor or wall when otherwise angry. It is amazing how she acts so completely like Owen in these times. If she were my first child I would be having her checked out by every doctor under the sun, but her behavior is almost perfect imitation of the exact behaviors her brother uses in a more serious and destructive manner. Now I am more saddened than ever to see her staring at us when we are trying to help Owen calm down (she used to cry during his meltdowns, now she just stares intently). It is natural for someone her age to learn by example and is probably the most vulnerable member of the family to the potential secondary affects of autism.

Don't get me wrong, we are very concerned about these behaviors. Mostly though, it has given us pause to think about how to best shield her from witnessing these behaviors from her brother and how to best respond to her when she displays the behaviors. Experts tell us not to give her any attention for it. This would be called "extinguishing" the behavior in the behavioral psychologist's terms, but I don't believe that is all we should do. I hope to stop by initially ignoring it when possible, but also being stern enough for her to understand it is not the right behavior to show her displeasure. Additionally, we are going to try to religiously remove either her or her brother from the room when he is having a meltdown. Other ideas anyone?

The Angry Word

2010-10-30T12:45:00.000-07:00

Owen is always choosing new angry words. What is an angry word you ask? An "angry word" is what I call that word Owen says when he is frustrated and has a temporary inability to communicate in any other manner. It started as "milk," then a few months later it was "yellow." Lately, the word has been "bike." How he chooses the word I do not know. I originally thought it was related to specific melt downs that involved the particular word (not getting milk when he wanted it), but now realize it is more complicated than that.

His "angry word" both alerts us that he is about to have a melt down and is also the word he typically screams over and over when he is having a melt down. He loses verbal and nonverbal means of communicating and instead and resorts to screaming his "angry word." I am thankful for the word some days for the warning it provides, and some days I hate the word for the fact that even with the warning I couldn't stop the melt down. I would give anything to figure out a reliable way to defuse the situation when I hear his angry word, but these meltdowns are a mystery. It seems I can successfully prevent one meltdown, but not successfully return Owen's frustration level to zero. A few minutes later, he will have a meltdown about something else.

Children with autism have difficulty regulating their emotions, and Owen is no exception. My next several posts will discuss ways I try to help Owen learn to regulate his emotions.

Have a great weekend.

How We Made Our Home Autism Program

2010-10-27T14:05:00.000-07:00

Many of the parents of kids in my son's autism treatment program discovered their children had autism only just a few months ago. Since a few of them were interested in the different therapeutic techniques I used at home, I thought I'd write a quick post outlining how I designed our son's home treatment program (activities my wife and I involve our son with at home).

I am going to qualify this post by stating that I am in no way an expert on autism. I share what I share in order to provide an example for someone interested in the subject, not because I feel I am qualified to do so. In this post I want to share with you how I developed our home autism program for Owen. The program was not designed to be substituted for more professional and intense autism treatment. We developed it to supplement the treatment he receives from professionals and to fill in the gaps on days he does not get treatment.

Here are some suggested steps you can take:

Step 1: Outline the child's strengths and needs. Using a combination of our own parental expertise and the different evaluations/assessments completed (e.g. Speech, Occupational Therapy, Medical, Early Intervention), we determined what areas our son most needed help with.

Step 2: Research therapies and potential treatment activities. We asked Owen's evaluators to give you ideas of specific activities we could do with him at home to improve his skills. We also spent many hours researching different treatment models that we thought might be capable of doing at home (floortime, RDI, Miller Method). A good place to start might be the treatment area of the autism speaks website.

Step 3: Create specific goals that are appropriate for your child's at home treatment. We next aimed to create goals for Owen that were simple, measurable and achievable. We also tried to make sure our goals were not duplicating any goals the professionals treating him had.

Step 4: Create a list of treatment interventions/activities that are designed to target each goal. Again, be sure these are activities you are comfortable doing at home and are designed for the goals you have written.

Here is an e.g. excerpt from the interventions section of our Owen's home program:

DIR/Floortime: Owen will participate in at least four floortime sessions per day. Floortime is a play therapy developed by Dr. Greenspan that focuses on fundamental developmental milestones typically absent or delayed in children with autism. It consists of 20-30 minute sessions in which the parent follows the child's natural play interests and attempts to expand upon their play to elicit more two-way interaction, engagement, shared attention, purposeful behavior, and problem solving. Although time will be set aside for floortime, it can also be considered an opportunistic intervention in that as parents we will always seek to expand upon Owen's activities in unstructured settings as well.

ABLC: Owen will participate in at least five Affect-Based Language Curriculum (ABLC) lessons each week. The ABLC program was developed to be used with the Floortime model as a means for a parent to provide intensive, in home speech therapy. Several areas of communication are addressed in the ABLC program including: imitation, two-way reciprocal interactions, receptive language, expressive language It combines systematic instruction of specific communication skills with applied floortime activities that give the child an opportunity to practice several skills at once in a natural play-like activity.

Relationship Development Intervention (RDI) Activities: Owen will participate in at least one scheduled RDI activity daily and additional opportunistic activities when possible. The RDI program was designed to improve the ability of children with autism to form relationships and friendships. The parent acts as a relationship coach/trainer in various activities starting with those activities promoting the most basic needs in building a relationship, and slowly advancing into activities designed to teach advanced relationship building skills.

Peer Play Dates: Owen's parents will attempt to involve him in at least 3 play dates per week with preference given to those with just one other peer.

Sign Language: Sign language will be paired whenever possible with spoken language. The use of sign language in conjunction with spoken language has been found to be more effective than the use of spoken language alone.

Delayed Responding: When appropriate and safe we will delay responding to Owen's attempts to enlist our help in obtaining something with the goal of motivating Owen to verbally communicate his wants.
Narration: Narration is a general strategy used in The Miller Method that involves describing each action a child is doing while performing an activity. The narrator is intended to sound similar to a sports announcer describing the actions of a game, and use very animated and excited vocalizations when the child has achieved something. This is believed to improve receptive language by continuously pairing the child's current action with words describing the action, and increase the child's self-awareness.

I really recommend that you type or at least write out the goals and interventions of your treatment plan. Writing it out gives you something to refer back to and build on in the future, and helps keep you focused. We also added a list of specific interventions that were recommended by the OT and speech therapists, and enlisted their thoughts on the other interventions we had chosen.

Step 5: Create an activity schedule.

Step 6: Review your child's goals and activities regularly. We choose a time each month to discuss the progress (or lack of) we are having meeting each goal. This also gives us a chance to change the plan when necessary and make sure we don't get stuck in a rut of doing the same thing over and over without challenging Owen.

Of course you should individualize your home program to your own personal style. Some of you are better at improvising activities from one day to the next or perhaps may just want to use one treatment philosophy. Most of the parents I've talked to haven't really taken the time to write out goals and interventions targeting each goal, but I find it clarifies my thinking and gives our time at home a stronger focus.

The Spectrum

2010-10-25T16:15:00.000-07:00

Getting to know the parents of the other children in our son's autism day treatment program really caused me to wonder at the huge range of "symptoms" of autism. I've heard someone say that specialists in the field of autism often use the saying that "when you've seen one child with autism, you've seen one child with autism." The more I talk to parents and hear about their own child's strengths and needs, the more I am amazed at how the symptoms can be so different.

Here are some examples of the strengths and difficulties a few of the children in our son's program have (names have been changed):

Andrew just turned three years old and needs to be carried "kicking and screaming" to therapy most days. He has numerous melt downs during class.Verbally, he has memorized the labels for hundreds of objects. However, Andrew is unable to use any of these words in a functional manner. He cannot ask for anything he wants or needs and lacks many of the needed social communication behaviors such as eye contact. Amazingly, this boy is three years old and can read books with no difficulty, and has memorized numerous songs on piano. Andrew sleeps 3-4 hours per night no matter when his parents put him to bed.

Michael is another boy in our son's class. Michael actively avoids eye contact of any kind, and uses less than 10 words total. Michael is constantly seeking sensory input through spinning. He sleeps for roughly 7 hours per night and eats an extremely restricted diet.

There are clear similarities between all of the children, but a huge range in severity of symptoms. On one autism-typical behavior (such as restrictive eating pattern) one child will have mild to no problems compared to another with severe symptoms. Yet the same child with such severe symptoms in one area may be the child with mild symptoms regarding a different autism-typical behavior.

It is of course pointless to compare one child to another, but thinking about the differences on our long drive home gave me a new realization and appreciation for the difficult task the therapists have in trying to both individualize the treatment and create group activities relevant to all the kids in the program.

Autism and Sick Don't Mix

2010-10-20T13:09:00.000-07:00

We just finished up three days of the stomach flu. The whole family had it, and it would have been hard enough to be sick ourselves and care for two sick children without autism, but throw one child with autism in and it is an entirely different experience.

It started on our way home from a trip to my parent's house. Owen had fallen asleep for the first hour of the car ride, but suddenly woke up crying and screaming with a look of terror on his face. This was followed by him vomiting several times. We pulled over, stripped him down to a diaper and cleaned him up. We then raced home and he vomited a few more times. He spent much of the first two nights awake, when he wasn't vomiting he was most likely screaming for milk.

We at first gave in and let him have his milk, but this invariably followed with another episode of nausea, so we decided to only allow him to have small amounts at one time. It is pretty much impossible to explain to a three year old with autism what is going on with his body (he was so scared) when they are throwing up, but we also couldn't begin to explain why he couldn't have his milk when he asked for more. I'm not sure he has ever had so many tantrums in a single day or night that were related to our attempts to limit how much fluid he drank at one time.

Well it is over, and I am happy to say there was one positive result from the experience. Owen learned how to tell us his tummy hurts. He now grabs his stomach and says "ouch." It is a beginning that we can work with and hopefully expand to other areas.

First Week Of Autism Day Treatment

2010-09-10T13:32:00.000-07:00

I could not have asked for a better outcome from Owen's first week of autism day treatment which we refer to as "school." Owen and his sister had to wake up one and a half hours earlier than their accustomed wake time. They both looked very dazed and confused, but we all ate breakfast and ran out the door on Tuesday without a hitch.

When we arrived at the treatment center the first day, Owen was a bit like a deer in headlights. He allowed the staff members to lead him into the classroom and seemed unconcerned the first two days. Yesterday and today he had a difficult time thought. He held on tight to me and crying "daddy" over and over. I finally had to put him down and let the staff lead him into the classroom. Yesterday this was followed with a tantrum, but today he recovered very quickly.

Despite some bumps along the way, each day the staff told me that the majority of the time he was very well behaved, followed directions, and had already begun to use his words to communicate his wants and needs. Today, to end the week I was really happy to hear the lead therapist tell me that Owen is a role model to the other kids in his class.

A Belated Update

2010-08-27T12:49:00.000-07:00

It has certainly been quite a while since I have posted. I don't have a good answer as to why. I think I've been a little burned out on the autism topic. Nonetheless, the break has been good and I'm happy to be in the posting mood again.

Owen has been making some pretty exciting developmental gains over the last few months. His receptive language skills have vastly improved, and he is able to consistently follow several one-step directions and a few two step directions. Among my favorite new developments with Owen is his artistic ability. If I had handed him a crayon or paintbrush a few months ago he maybe would have made a few marks on the paper, but most likely would have had nothing to do with it. Recently he made so much progress he will independently sit at the table with several markers or paints and draw several lines and circles with each color in front of him. He may even sit there for 15-20 minutes content to make his marks with each color.

Owen's speech therapist has been raving the past several sessions about his ability to follow here directions and even remain seated at a table to do activities with her that are probably not very exciting to him. So I guess he is making progress.

We of course still have days where it seems like we take two steps back, but in less than two weeks he will be starting an intensive autism day treatment program. The staff at this program are amazing. It is clearly not about the money for these people. I have had 45 minute telephone conversations with several of the staff and our assessment appointments have often gone over the time limit by a half to a full hour just so they could answer all of our questions. I am sure he will make amazing progress.

Autism Does NOT Lead to Higher Divorce Rates

2010-05-28T16:00:00.000-07:00

You've probably heard that parents of children with autism have a divorce rate of 80%. I've heard if from my son's doctor, I've heard it from his grandparents, and I've even heard it from his social worker. Trolling my favorite news source (MPR) for autism related news I found an interesting blip.

Here is the link: http://minnesota.publicradio.org/collections/special/columns/news_cut/archive/2010/05/autism_and_divorce.shtml

A study done in 2008 by Easter Seals (page 39) found that parents of children with ASD were less likely to have been divorced (30%) than parents without (39%). Finally, some encouraging news. I was so sick of people bringing up the 80% divorce rate. If you haven't already read the study, I highly recommend it. The study had a large sample size of and provides some interesting demographics and, unfortunately, much of the other findings depict how anxious and concerned parents of children with ASD are about their child's future.

Well worth it study to read.

The other study quoted by MPR was released a few days ago. This study used a huge sample size and found only a 1% difference in divorce rates between families with a child on the spectrum and a families without one.
I'm glad that the next time someone gives me the old 80% talk, I've got empirical research to fight it with.

A Visit to the Autism Day Treatment Center

2010-05-13T12:54:00.000-07:00

We got a call last week that Owen will be able to start autism day treatment at one of two facilities in the area that provides this type of treatment. The developmental pediatrician that diagnosed Owen with autism said autism day treatment was probably the best choice of treatment for Owen. We were very excited to get him in because both places providing it had told us it would be at least one year on the waiting list before getting into one of their classrooms. Now, they are looking at starting him in September so about 6 months on the list. This is assuming he qualifies. To qualify he has to have a medical diagnosis of autism, and qualify for occupational therapy, speech and mental health services. Owen has the medical diagnosis, is already qualified under the speech assessment completed by his speech therapist, but still needs to qualify for the mental health and occupational therapy in order to be admitted.

Yesterday, we had the OT assessment and were relieved that although his motor skills are somewhat high functioning in comparison to his age-equivalent peers with autism, the assessor felt that there was enough room for improvement to qualify him for the program.

While we were there we had a chance to tour the facility and the director of the autism day treatment programs met with us for about an hour and a half to discuss the program. The day treatment is 4 hours per day Monday through Friday (8:15-12:15). There are 6 children in each classroom and each classroom has a Clinical Psychologist overseeing it, a mental health practitioner, an Occupational Therapist, a Speech Therapist and two paras. Additionally, a music therapist does activities three times a week. So, it is generally a 1:1 ratio and involves a very comprehensive group of professionals. The program is very structured but does not use ABA. They use principles from the Floortime, RDI and TEACCH models as their primary program philosophy.

Because of the number of professionals involved in the day treatment it is very expensive, but so far it looks like our insurance company will pick up most of the bill. It will be hard work as it is 40 miles away through a pretty heavy traffic area. Our plan will be to try to get Owen into another preschool special education class in the afternoon and get him to that class just in time. Life will be busy.

We have the first part of the mental health assessment and are keeping our fingers crossed that he will pass (or fail depending on how you look at it) that part of the evaluation and get into the program. I can't imagine that after all this, they wouldn't come out of the mental health assessment agreeing that he does in fact have autism.

Wish us luck.

The Pros and Cons of the Affect-Based Language Curriculum (ABLC)

2010-05-05T09:35:00.000-07:00

The Affect Based Language Curriculum is a book and CD ROM combo that was developed by Greenspan and Lewis. Stanley Greenspan is a well known autism expert and developer of the DIR/Floortime treatment approach for autism and other developmental disorders. Coincidentally, I learned that he recently passed away; it saddens me when someone passes away that has contributed so much to the treatment of autism. Diane Lewis is a speech language pathologist. The curriculum was intended for parents, teachers or speech therapists of children with autism or other communication disorders.

I've now had a chance to read through the book, complete the checklists, and design a program for Owen. Creating a program is somewhat time consuming, but relatively painless. There are several skill checklists you have to go through and see what level your autistic child is at in the different areas associated with language such as imitation, back and forth interactions, receptive language and expressive language. Next, you have to decide which skills you want to start working on, and how many skills you will work on at a given time. When you are working on particular skill (for example waving goodbye) you are doing what they call systematic instruction.

There are various "foundation activities they suggest for the different skills that involve ways to get your child engaged with you before teaching a particular skill. It will be difficult to get your child to participate in the systematic instruction part if your child isn't first engaged in the activity and attending to you. After you are through with each of the systematic instruction skills, you are supposed to do "applied floortime" activities. These are play activities that focus on using several of the systematic instruction skills at once in a more non-instructive, play setting.

After trying it out for a few months now, here are my Pros and Cons:

Pros:

The program is very thorough and covers the entire spectrum of skills necessary to be an effective communicator and develop language. As you work your child through the skills in the 5 levels of the program you begin with very basic language skills in the areas of : 2 way interactions, imitation, receptive language, and expressive language skills. You end with pragmatics and very advanced play and interactive skills every child needs to fully engage with their peers and environment.
You can easily individualize the program to your specific child's strengths and needs. The program has very thorough checklists that determine where your child is in each skill area. You can then choose specific skills to work on based on your individual autistic child's needs.
The program can be done by anyone. Although it will take some time to learn and adjust from a "play with your child" mode to "play to teach" mode, the program is designed for parents, teachers or speech therapists alike.

Cons:

The program could be considered overly complicated and takes a while to learn. The book itself is 380 pages long (many of which are the checklists and skill activities). If you are wanting something you can start immediately without putting in much start up effort, this book might not be for you. That being said, it isn't that bad and once you read the book and get comfortable with it, you'll realize it is giving you the power to provide intensive, at home, speech therapy to your child.
The activity examples used for systematic instruction of the skills are a bit too specific. I'm all for details, but some of the examples use very specific toys that could instead be described using more generic terms. For example, instead of telling you to use a "Dora" doll, they could describe how to do the activity with any generic doll you have laying around the house. However, I found it pretty easy to substitute toys and objects I had already for most of the activities instead of going out and buying all the props their examples use.

Overall, I think this is a really great program to use if you are looking for a very comprehensive, yet usable home speech therapy curriculum for your child with autism or other special language needs. However, you will need a fair amount of patience to both learn and stick with the program.

Back to the Blogging Again

2010-04-30T15:24:00.000-07:00

Well, it has been a long time since I have posted anything. Things did not go well the past few weeks with Owen. He has had a 3 week long cold, and 4 doctors visits, 3 ear infections, and 5 different types of antibiotics later--I think he is over it. His routine is completely messed up and we have endured numerous almost sleepless nights and endless tantrums. So, I have been without posting ideas or energy.

Today, I hope to start a new set of blogging and hopefully we are past the worst of this episode of autism wars. I should be adding several posts over the next few days based on some ideas I have had over the last few weeks, but lacked the energy and emotional surplus to fulfill.

In the mean time, all the gains we seem to have made in speech therapy and our own home program regressed during Owen's sickness. He didn't make any functional requests such as "more milk" during his illness and now we are slowly in the process of building him back up. His "independence" skills have also regressed. He has become very clingy and reliant on us to solve all of his problems.

Another new development is that we have decided to nix the gluten free casein free diet. We only saw the negative effects of the diet: restricted eating, loss of weight, financial expense and an inability to easily eat out. I know there are a lot of you out there that think the diet is effective, so I'm just going to say it didn't work for us but I'm glad it works for you.

The worst part of the last few weeks of bloglessness, and perhaps the real reason why I've been too tired or depressed to blog is that we are starting to see signs of autism in our 1 year old daughter. Two major symptoms have come up and they are reduced eye contact and a sudden lack of response to her name being called. It is amazing because just a few months ago both the early intervention evaluator and developmental pediatric specialist noted how interactive she was and that she will be a great play companion to Owen.

I'm really hoping we are just being paranoid parents on this one.

Routine Stubborness

2010-04-01T20:42:00.000-07:00

It seems that as time goes on, Owen is getting more and more stubborn and rigid about his routine. As a baby, he was pretty flexible with a change, and rarely fussed in response to a change. Now, I wonder whether it just seems that he is more stubborn about his routine because I know he has autism, or was I blind to it before I was aware of his disability?

I'm pretty sure he is getting more stubborn. Last summer we went on daily walks together. He never showed concern over a different route. This spring we have started up the daily walks, but he has a "minitantrum" anytime I decide to change the route. It got so bad today that he didn't know what he wanted to do anymore and simply sat on the sidewalk refusing to budge. I ended up having to carry him and his tantrum home. When the neighbors want to stop and chat, I have to tell them I can't because he doesn't want to stop the walk. I think I will quit walks for a week and do some other outdoor activity to replace it.

Transitions seem to be getting worse too. Switching from one activity to another seriously stresses the boy out. We have been trying to use the PECS program to help communicate what is going to happen next, but we can't get him to attend to the pictures.

We have a neighbor's birthday party to go to this weekend. I wonder how that will go.

Night Time Tantrums

2010-03-25T20:43:00.000-07:00

It has been a rough couple of nights for Owen. He's been waking up at 1 am crying and this turns into a full blown tantrum. We have always struggled with what to do when he wakes up in the night. Conventional parent "wisdom" is to let them cry it out and go back to sleep. This sort of thing doesn't work on Owen and I suspect it wouldn't work on many kids with autism. The trouble is that once we go into his room, there is not going back. We can't just check him to make sure he is ok and then say good night, see ya in the morning. It doesn't work like that for him. Previous attempts at this always have led to him banging his head into the crib. Not a soft hit, hard enough to leave bruises and swelling. So once we go into his room we then have to bring him up to our bed.

Of course, once we bring him to our room he is smart enough to realize that we will do that the next night, and the next, and the next. This is how it has been for the last week. Tuesday night he really had a melt down. Even after we went and picked him up there was no calming him down. After about a half hour of intermittent screaming and tantrums which also repeatedly woke up his baby sister (a very scared sister when he cries) he finally said "milk." We then tried to give him milk, but he was too upset to accept the help and the tantrums went on. About an hour later he finally accepted the milk and downed the entire sippy cup of it in 10 seconds.

He ended up sleeping in the strangest of positions across my lap in our reclining chair. Until recently, Owen has had that much trouble sleeping. I'm told though that sleep problems with autism is pretty common. I am praying he will sleep through the night tonight. I could really use the sleep.

Taking Me By The Hand

2010-03-24T11:36:00.000-07:00

Over the last few days, Owen has been showing a new behavior. He has been taking my wife and I by the hand or tugging at our pants to bring us to something he wants to do. I'm not an expert on autism or signs of improvement in autism, but it seems this would be a good thing. Owen's speech therapist agreed that this is a great new skill. It is a big leap in nonverbal communication skills. The major part of his communication trouble is not being able to tell us what he wants or needs. Taking us by the hand is a big step into the world of communicating what he wants or needs. We are hoping this will continue and decrease some of the tantrums he has throughout the day that are caused by us not knowing what he wants. Still, even when we know what he wants, he often is so worked up we can't calm him down just by satisfying his want/need. We need to really start teaching him how to self-regulate his emotions...my next post will tell you how awful last night went. Wow!

The ABLC Speech Language Home Program

2010-03-19T13:12:00.000-07:00

Last weekend we started the Affect-Based Language Curriculum (ABLC) written by Greenspan and Lewis. Stanley Greenspan is the main developer of the floortime treatment approach for autism. This book was created to provide a more intense speech-language component for those using the floortime approach for autism and children with similar special needs.

Well, we haven't actually started the program just started reading the book really. It is 350 pages and not a quick read, particularly when we have so many other things going on at once. While I'm excited to be learning how to do a home based program, it is clear that it will take some time to get started and even longer before I am comfortable with the program. There are many checklists to go through to first determine where your autistic child may be as far as skills. Then, using the results of these checklists you determine what areas to start on and what level to start at. The program seems a bit more complicated then it needs to be and a little unrealistic in expectations. The main trouble is balancing the fact that I can't ignore Owen's younger sister to give him one on one therapy, and there are a hundred other things to be juggling.

I will do my best, but I think it will be quite the struggle implementing this program. We recognize the need for increased speech therapy and feel that the lack of communication is the primary deficit linked to Owen's autism, so we will do our best to get more comfortable with this program. It would probably be easier if I did the program under the supervision of an experienced floortime therapist, but there aren't any around here so I'm going to try to do it without. Does any one else out there have experience with the ABLC program?

Special Education Preschool Day Three

2010-03-17T20:57:00.000-07:00

Today was day three of Owen's new adventure in the exciting world of special education preschool. I have to say that I thought it would be much worse considering he is a two year old with autism, and has rarely seen a time without either his mom or dad present. I have been staying for the first hour of the class and plan to be present less and less. The teachers have been great and are totally understanding of how difficult such a transition will be for a boy with autism. Owen seems to be easily calmed by the teacher, and the teaching assistant has a boy with Asperger's syndrome, so she enjoys talking to me and giving tips.

There are a total of eight kids in the class and two others have autism, and from what I've seen, they appear to have a more severe form of autism. Owen appears to have made friends with a little girl and they seem to enjoy playing together. She was having a tough day yesterday and Owen seemed to be the only kid she wanted to play with. He got a huge smile from her. However, another boy in class has a little crush on her and appeared a little jealous. Apparently this boy moves the chairs around so the girl has to sit next to him. Cute kids!

First Day of School

2010-03-16T13:51:00.000-07:00

Yesterday Owen attended his first day of Special Education preschool at a neighboring school district program. His school plan had called for him to receive 1 hour a week of in home services with a special education teacher and to start up with a preschool in the fall. We were not getting much out of the in home stuff and the developmental pediatrician had recommended that we start preschool as soon as possible, so we petitioned our school district to reconsider. They did reconsider, but denied him. However, the neighboring school district offered to open enroll him so we did. We still aren't pleased because our school district has a special preschool program for children with communication related disorders, and they use the TEACCH model designed for autistic children.. Our hope was to get him into that program, but we will take what we can get and wait till fall for the good program. Still, the neighboring district's preschool program does have a speech pathologist and Owen will get an extra hour of individual speech therapy as a result. Additionally, this will offer extra peer interaction and circle time.

So far, Owen didn't much care for the program, but we expected this. After about a half hour, he noticed I was gone and got pretty mad. He attempted to bang his head on the floor, but the teacher stopped him. I expect the next couple of weeks to be worse now that he knows what is going to happen.

His first day was pretty difficult, he clung to my leg pretty hard and was pretty upset when I left. This would be expected from any child with or without autism that has never been to daycare. He also attempted to bang his head into the floor, but he made it through unscathed. I imagine it will get worse before it gets better. He does look pretty cute all dressed up for his first day, backpack and all.

A Great Week

2010-03-12T22:27:00.000-08:00

Owen made some huge leaps this week and we are very excited. Early this week we put in one of his favorite DVDs (veggie tales) and he began singing along with some of the songs. Owen has never done this. It is common for autistic children to have a lot of scripted/memorized language, but I'm told they often have trouble learning to sing along in unison with the song. Throughout the week I put in his favorite CDs and he has been singing along to almost all the songs. We are excited, and this may have an added benefit of improved peer play. Being able to sing along with other children is a great skill.

The other leap Owen made was in pretend play. Pretend play is also typically difficult for autistic children, and if you've read my previous posts I think it is extremely important. For a few weeks now we have been using bubble blowing as an activity to elicit communication from Owen. We have gotten him to say "more bubbles" to get us to blow more bubbles. For the last week Owen has been sticking his fork into his milk glass during meals. I hadn't been able to figure out why he started doing this until yesterday when he stuck the for in, lifted it to his mouth and said "bubbles." It was obvious he was pretending to blow bubbles. The nice thing about that was I never did any pretend work on it. All we ever did was the real thing. The fact that he pretended on his own was awesome. I hope he keeps it up.

The Importance of Choosing Empirically Supported Autism Treatments

2010-03-11T14:02:00.000-08:00

This post was inspired by my mother. She was evidently up doing some "research" one night and read some theory on autism being connected to Lyme disease. She sent me an e-mail asking if Owen could possibly have Lyme disease. I admit I haven't fully explored the evidence that Lyme disease is connected to autism, but I will say that since learning of our son's autism we have been attacked from all sides with suggestions on both causes and treatment methods that are not empirically supported.

I'm not saying you shouldn't try a few harmless treatment ideas that lack research showing their effectiveness. As you may know from my previous posts, my son is on the gluten free casein free diet. The diet has a lot of supporters, but not a lot of research indicating it is effective. Just be cautious and consult with your child's pediatrician before attempting new strategies that haven't been sufficiently tested. This post will go over what constitutes good empirical support for an autism treatment method, and what sort of treatment effectiveness "evidence" should turn on your potential quackery sensors. There are many people out there trying to sell you on why their method for treating autism is the best method. They all make great arguments for why their method will work, some have good research backing up their arguments, and a few seem to be mostly interested in your money.

Anecdotal Vs. Empirical Evidence For Autistic Treatment

You may have heard people refer to the evidence for the effectiveness of certain autism treatments such as the gluten free casein free diet as anecdotal. This term basically means that there has been little scientific support for it. The evidence for whether the treatment improves autistic symptoms is based on the observations of parents, doctors and others involved with the child. This sort of evidence is not bad all by itself and qualitative research regarding treatments is similar. It is very important to obtain the opinions and experiences of those involved in the treatment. However, in my opinion, anecdotal support for an autism treatment is not enough to make a reliable conclusion about its effectiveness. Unfortunately, treatment methods relying only on anecdotal support are subject to both unintentional and intentional bias. Here are a few of the potential biases that anecdotal evidence could be influenced by.

A favorable results bias. Due to a lack of other information about that treatment method, there is often a favorable results bias. That is, we hear a lot from the parents and doctors that believe the treatment method works, but we don't hear nearly as much from the parents and doctors that have either tried the method with no success or have studied the method and found it to not work.
Parents are very susceptible to suggestion. Parents of autistic children are really aching to find something that will help their child. It is well known that parents are likely to perceive greater progress in their child if they are led to believe a treatment strategy will work. So if the majority of evidence for an autism treatment is based on parental reports, be cautious.
Lack of an objective before and after look at symptoms. The underlying missing element of anecdotal evidence is a lack of objectivity. Even worse is that there is no way to compare the before and after level of the illness. If a treatment method works, we would expect to see a reduction in symptoms after the treatment is put into effect. All we have with anecdotal evidence is an opinion that things got better.

I believe that treatment methods with a solid backing of empirical/scientific research should be used as your core treatment method for your child's autism. Autism treatments with good research backing will have good controlled studies backing them up. There are many qualities of good controlled studies to watch for in the research:

Double Blind: Neither the researchers nor the patients know which treatment condition they are in. This helps avoid exaggerating the effect because either the patient or researcher believes the method does or does not work.
Independent Research: Research should be conducted by outside researchers that have no connection to the organization or authors of the treatment approach. This is the only way you can assure it is unbiased. The research should also be published in a peer reviewed scientific journal. The peer review process helps keep shady research practices from being accepted.
Controlled Pre-Post design: Most research on a treatment method will involve a minimum of two treatment groups a control and an experimental. The control group does not receive the treatment (or a placebo), the experimental group does. Additionally, an objective analysis of the child's autism symptoms is collected before and after treatment. Lastly, statistical methods should be used to determine whether any improvements are actually significant or what we would expect to get by chance.

It is without a doubt hard to design good controlled studies for some autism treatments. Who would put their kid in a research project when they might end up being in the control/placebo group? Unfortunately, most of the autism treatment methods out there do not have sufficient scientific backing, but some have more than others. It is also tough for the typical parent to find the research available on a treatment method. Good places to start are at pubmed.com (you have pay for anything beyond an abstract) or by searching through the journals or your local university. Here is a site listing a few journals dealing with autism: http://www.researchautism.net/pages/autism/resources/journals

I'm not saying you shouldn't try a few treatment strategies that haven't got much good research backing them up. Just be cautious and make sure it is really in your child's best interest. You might also check with your child's pediatrician to confirm the safety of the treatment methods you choose. This rant was a bit longer than expected.

The Specialist

2010-03-02T14:12:00.000-08:00

Yesterday we had an appointment with the developmental pediatrician specialist. He very quickly confirmed the diagnosis of autism. The happy news was that he believes our son will have "high functioning" autism. I hate that label because it implies there is a label called "low functioning." He believes that, based on what he saw, Owen's language skills will expand quickly if given intensive treatment. Intensive was defined as 30 hours or more a week.

Interestingly, he didn't think speech therapy would be all that valuable to him right now. He said it didn't appear that Owen would engage with a therapist right now. I disagree on this one. Yesterday was a long and drawn out day for Owen and by the time we finally met with the specialist, he was withdrawn and unengaged. He does engage with the speech therapist and shows a lot of interest in playing with her. I think he'll do just fine.

We asked him about the gluten free casein free diet; it sounded like he was against it. He said they had a publication on their website, but this was only guidelines so that if parents did it, they did it in a healthy manner. He doesn't believe there is any conclusive evidence the diet works. But, we will continue trying it anyway. He did say the diet shouldn't do any harm. I asked him if he would write a prescription for it so that we could get a grant to help pay for it. He refused and said that would be an endorsement of it.

The specialist advised us to get him into an autism day treatment program as soon as possible. That is the tricky part because all of the programs in the area providing a day treatment program have a year long waiting list. Considering the need, I'd say it is time to start another autism treatment program in the area...