Sunday, January 27, 2008

A Few Changes

To use a corporate term, I've recently been "re-engineering" my blog. Little did I realize back in April 2007 when I began blogging that it would develop into what it has.
This is my 74th blog entry. I have had over 750 comments to my posts, most of which have been thought-provoking and appropriate. I have had over 12,000 visits to my little corner of the internet. My visitors have come from no less than 20 countries around the world, perhaps more that I haven't noticed.
Blogging has helped me to develop a clearer understanding of the science of autism and the people involved in the autism community. I can now count among my personal friends other parents of autistic kids as well as autistic adults - I began these friendships online but have been fortunate enough to extend several to the offline world as well.
I have developed relationships with professional authors, I have received positive feedback from professionals who provide service for autistic people. I have gotten comments from autistic people who have endorsed my efforts at being an ally to autistic people. I have received a "Roar for Powerful Words" award from an autistic self-advocate. I have had 4-hour long cups of coffee with world-renowned autism researchers. I have signed online petitions and written letters to the NIH and the CMS.
My involvement culminated in a presentation at the University of San Diego Autism Institute's Winter Conference, at which myself, Bev Harp, and Dad of Cameron spoke to a group of parents and professionals about the Autism Hub and how blogging has created a new environment for autistic self-advocates. In all, my experience with blogging, with the Autism Hub, has been a very positive one. It has been said that you can only get out of something equal to what you put in - I think blogging fits that paradigm quite well. The act of writing this blog has made me a better person, a better father to my autistic son.
Back to the reorganization. First, I found a really neat widget that creates a Tag Cloud. This is the image you see just below 'Recent Comments' on my sidebar. The Tag Cloud shows all of the tags I have assigned to my posts, and the size of the text is proportional to how many times that tag has been used. For example, some of my largest tags in the cloud are Autism (what a shocker!), Advocacy, Education, Ethics, Fatherhood, and Parenting. This I think is a fair representation of the form this blog has taken over time, these are the things I mainly talk about. Way back in my second post, I mentioned how I anticipated it would be difficult to find my niche on the Autism Hub in light of how many great writers were here and how effectively they covered the various topics. 9 months later, one can look at the Tag Cloud and see how that question has been answered.
Next, I added a section to my sidebar at the recommendation of two people - a "Best Of..." I was hesitant to add this, as I don't consider anything I write to be all that worthy of Best Of status. But I did it, and it was admittedly fun to take some time to review some past posts.
The last change I made is an idea I swiped from Kev Leitch's Left Brain/Right Brain - an RSS Feed to the website. This is an online medical journal that is sponsored by the National Autistic Society of England and features research about Autism. If you read the Editorial by Lonnie Zwaigenbaum of the University of Alberta, you will see a good synopsis of this issue's studies. If you happen to be someone like Harold Doherty, you may be distressed to learn from a couple of these studies that people diagnosed with Asperger's Syndrome and those who are less severely affected by Autism Disorder also experience difficulties in life. You may even come to agree that it is a valid avenue of research to look at some of these diffculties. Regardless, I would encourage other Autism Hub bloggers to add this and any other available research-related RSS feeds to your blogs as well. It is just one small way to increase access to published research for those who may be interested.

So that's it for my reorganization. I want to thank everyone who has taken the time to visit, to read my opinions and offer their own. I certainly look forward to more such opportunities as we move forward.

Sunday, January 20, 2008

Thoughts on ABA

I've been wanting for a while to offer some thoughts about Applied Behavioral Analysis. Before I do, a few disclaimers:

I am not an expert, I do not profess to be one. This is true from both a functional and academic standpoint. This is, I would remind any reader, One Dad's Opinion.
There is a lot to write about as concerns ABA, and I will definitely not be hitting all issues in one blog post.
Comments, as always, are welcome and invited. If you disagree with any of my premises or opinions, or if you think I am marvellously well-grounded in my ruminations :), let me know.

Okay, ABA. I'm torn on this topic. I think that, first of all, the methodology and probably the very concept is highly misunderstood by parents of young autistic children. I think my first concept of ABA was something like, "They observe and record current behaviors on an ongoing basis, in an established format of record-keeping, and they use progress or lack thereof in specifically defined areas of performance to determine how best to continue to modify the behaviors." My definition has changed a bit over time, but not by much. When we first settled on this as a good idea for our son, it sounded like a marvelous approach. Not only that, but it apparently was the only treatment for autism that was backed by some science.
I have learned much over the last couple of years. Many things I've learned have caused me to not only doubt ABA's efficacy, but also to question its approaches from an ethical/humanistic standpoint. Other things that I have observed and studied have led me to believe that my son has benefited tremendously from our choice to provide him with this 'treatment'.

First of all, let me make it clear that our ABA program, administered by a really nice group of professionals, is not traditional ABA. There was record keeping, but not during interaction between Jason and the therapist (only after). We reached around 20-something hours per week and sustained that for maybe 18-20 months, but never even came close to the recommended 40-hour regimen. By virtue of these differences, it would be impossible to say that Jason received ABA in the true clinical sense.

Some people I know are critical of the process of this type of B-mod approach. These concerns are valid, but never seemed to be relevant to the situation our son was in. There was tons of positive reinforcement, there was a lot of "parent-training", and there were lots of breaks, play, and sensory-diet-type interval-based body regulation. Jason developed real relationships with his therapists, relationships that have lasted to this day. A great example: last week was our son Colin's 1st birthday. 2 of Jason's former therapists attended, and neither one of them has 'worked with' Jason for quite a long time. Jason was very happy to see both of them. One of them had Jason in her wedding - he walked down the aisle! (with my help)

So I suppose the question, at least in our son's case, becomes: Did the ABA part benefit him, or was it the relationship-based learning? I don't know the answer to that question - no one does. But I have done a lot of thinking about it, and have arrived at this thought:
Kids learn from their community, the people who surround them. Many autistic kids, regardless of their specific experience with autism, do not have the community around them that most typical kids have. This is true for numerous reasons, but I do think that in many cases it is true. Well, in Jason's case, I think these wonderful, caring people that Jason saw several times per week, people who laughed with him and did his sensory stuff and shared chocolate chip cookies with him (not as part of therapy- just because my wife makes really good cookies), people who were so excited when he passed milestones or said simple words, people who were firm but gentle when they saw a teachable moment and capitalized on it, these people became Jason's community. And he learned from them - not just skills, but how to be a friend and a kid and a student. Things all kids should learn. Maybe, because he is autistic and they were here doing the 'therapy' thing, Jason's community looks a little different than it would for typical kids. This doesn't invalidate any benefits Jason received, by my estimation, though it also doesn't lend itself to supporting ABA as an approach to improving the lives of autistic people in general.

Okay, I now realize that I have settled on a direction for the first post I am doing on ABA. I'm going to have to get into some of the other things - the things I originally sat down to discuss - at a later time. This is one thing I like about blogging: instead of going back and re-writing this post to smoothly incorporate my topical change of direction, I can simply state my human-ness and move on. How nice.

So, to summarize briefly and create a break off point for this portion of the ABA discussion: My son has, like many kids, undergone many positive changes during the time he has been exposed to behavioral therapy. There is no way to know exactly why this change has occurred, but I think it is likely that the people (not the methodology) have been the primary source of benefit to him.

Thursday, January 17, 2008

Katie and Family...

The Autism Hub is a community of people, and it stands for many things.

Today, we stand for one thing. Today, we stand for the memory of Katie McCarron.

There are lessons to be learned from the tragic loss of Katie.
There are things I would like to say about how wonderful the McCarrons are.
There is an urge to understand how things like this happen.
Today is not the day for any of those things. Today is a day for a moment of silence, a moment of reflection. Today is a day that I hug my own kids a bit tighter, that I appreciate my own parents for the positive choices they made during my childhood.

Today, Katie looks down from heaven and smiles while we shed a tear, gather ourselves together, and stride forth into the world to enact the words of Katie's father, Paul McCarron, who today said:
"I ask all parents and especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies."

God bless Katie McCarron and her family.

Saturday, January 12, 2008

Words Matter

There is power in the written and the spoken word.
There is perhaps even more power to be found in the introspective use of language. This self-conversation, regardless of what form (words or pictures), language, or stage of development it occurs in, will have a significant impact on not only our choice of language when we do communicate, but also on our overall view of the world.

As an aside to this, I believe that all of us carry on this internal self-communication, regardless of our ability to indicate this communication to others. This is an important concept for me to present to you, as it is a foundational belief that dictates a lot of my other views of those whose are autistic in such a way that they are unable to speak or, in some cases, communicate via virtually any means at all with others.

In the world of functional behavioral analysis and resulting behavior modification techniques (which combine to form ABA), there are several commonly used terms which collectively can be referred to as the vernacular of the profession. Without discriminating against those who work in this profession, without assigning value-based judgments on those who have, or might, or will use these terms, and while considering the clinical and functional value of these terms (at least as intended) lets review some of the language and present some alternatives as to how we could think of/say the same thing:

"He has shown a 'splinter skill' in regards to his use of the computer mouse."
He likes to spend time on the computer.

"She has a tendency to go 'off task' frequently."
She's taking a break.

"He is 'perseverating' on certain toys at the expense of other 'imaginative play'."
This kid is a world-class 'Cars' fan!

"Her episodes of 'non-compliance' are increasing during the lunch hour."
She is taking a stand that she wants a salad with Italian dressing. Or that the afternoon sun is too bright on that side of the room that we always make her sit.

"His 'episodic severity' has increased significantly since we changed his room."
His former roommate reminded him of home because he looked so much like his brother. And they hugged a lot - the new roommate doesn't do that.

"Ongoing 'food aversion' issues make mealtime such a challenge."
She recognizes that a lot of dairy affects her digestive tract and results in discomfort, so she has decided to only eat dairy for breakfast.

"He has 'regressed'. He used to play chess every day and now just throws the pieces on the floor."
Ever since his long-time chess-playing partner died, his loneliness is intensified each time he sits at the chess table.

I could go on, but perhaps you see the point. Can we, as a community of autistic people and those who love them, presume competence at all times when considering/interacting with those who are unable to communicate in a way that we can easily understand? Yes, we can. And I think that carefully reviewing our language, our words, our internal dialogue and the external result of it, can provide a great place to start.

Thursday, January 10, 2008

One Dad's Opinion...

As you may have gathered by some of the comments to my last entry, I promised that I would post something here about the presentation at USD.

You see, the three of us who participated are not exactly seasoned veterans of the speaking circuit. We are people with a message who were provided a wonderful and unusual opportunity to offer that message in an unfamiliar medium. We coordinated our presentation amidst the separation of 2 continents, 3 countries, 4 states, about 9 or 10 people, 2 powerpoints, 4 videos (2 specially made for this purpose) - all via email and some brief conversations.

One error we made in our approach was the time needed to present. I know I had the feeling, and I think Bev and Do'C did also, that we each personally were going to struggle to fill the time allotted to us and thankgoodnesstheothertwoweretheresotheycouldpickuptheslack! But it turned out that we all had plenty to say, that the attendees had lots of questions for us, and that after about 115 minutes of what was supposed to me a 90 minute presentation, we had to stop. I had not yet done my part, the topic of which was to be how the Autism Hub can help to develop a positive parenting approach. So, in keeping with the spirit of the presentation, I explained that I would post my portion of the presentation to my blog so that interested attendees could visit the Autism Hub with the intention of reading it there.

So ... here is my part of the presentation, condensed down from speaking version to written version.

  • I’d like to begin by showing you another video:
  • Imagine that you are a parent who has just recently received an autism diagnosis for your child. Some of you don’t have to imagine it – you know exactly how it feels. And I could describe to you how it felt for my wife and I when our son was diagnosed back in January of 2004.
  • I think one of the most significant memories I had of that time was a feeling of not knowing where to turn. Immediately following the grave pronouncement of our son’s diagnosis, they sent us home with a pamphlet of general autism information and a thin packet listing local service providers. That’s it. “Ummm … he’s autistic, now have a nice day!” And it seems to me in talking to other parents that many of us have this same feeling. Here we are, in the initial stage of our entry into the world of special needs, and not really having any good idea where to turn for guidance and support.
  • Now imagine that you jumped on the computer during those early days post-diagnosis and came across the Autism Hub. You clicked on the video I just played. Yes, this video was just posted for the first time last week. Unlike some of the other videos, it was not specially created for today’s presentation. This is just exactly the type of thing you find on the Hub. The creator of the video, by the way, is right here – he is Dad of Cameron from Autism Street.
  • How would you feel as you saw this? (To self: Really ask the audience here- How would you feel?) I know how I felt upon my early exposure – I felt like I had found the right place for me. Here were thoughtful discussions about how to ensure a good world for our kids. Here were powerful scientific minds who had already spent thousands of hours sifting through available research and were eager to discuss their findings. And best of all, here were autistic adults and those who care about them – adults with highly variable presentation of autistic characteristics– discussing all kinds of things ranging from advocacy to services to bullying. Important things that are relevant to every autistic person’s life.
  • What’s more, by reading these blogs and interacting with the authors of them, I came to realize that autism was not just the quiet little boy in my own home. The autism community is big!!! and many adults had been much like my boy during their youth and were now engaging me in intelligent, lucid debates about a huge range of topics. Your flyer contains a quote from Autism Diva’s site – “Autism, Its Not What You Think”. There is an important message included in that simple statement.
  • Consider for a moment the impact of this revelation. This was prior to my son developing speech, he had been diagnosed with classic autism, he was our first child, and we had no tools to even begin to anticipate what he might present like in 5 years, 15 years, 30 years. And here were these people, some of whom were just like my own son, taking their time to educate me on autism. The brochure I was given was wrong, Autism was not what I thought.
  • So I’d like to share with you, briefly, some of the ways in which my exposure to, and participation with, the Autism Hub helped shape our approach to raising our son, who is now 6.
  • The first thing I think that hit home by reading the Hub has to do with how we chose to support Jason. I choose that word carefully – support. You see, the very first stage some parents enter after the autism diagnosis for their kid is what I call the “parent-as-superhero” stage. This is the point where you say to yourself “I’ll do anything … anything! Move anywhere! See the best experts! Spend ourselves into bankruptcy! Anything to save my son!” We certainly reacted this way.
  • But what I realize now is that the goal all along should not have been to “Fix” my son. He is wonderful and perfect under any circumstance. The idea was to learn about and then to provide the proper supports for him just like Martha and Gary have talked about in prior sessions. The realization that a cure-oriented approach was not going to be the one for our family did not in any way result in a lack of effort or attention to providing proper supports. What it did do was to focus our efforts on enjoying his process of development instead of always wishing for something different and looking for gradients of behavior, it allowed our family to spend its time learning together instead of staving off unwanted behaviors, and it caused us to put our son’s self-esteem at the forefront of the goal structure.
  • In our case, the support strategies we settled on included various speech and behavioral therapies, educational supports, a special weekly peer group meeting, and an adaptive horseback riding program. I realize that this sounds like a neatly packaged approach in retrospect. In reality, we bumbled through the implementation like everyone does.
  • I have learned that raising an autistic child is not a race whose outcome is determined in the first few laps. Kids become teens. Teens become young adults. They become adults. Since my oldest son is only 6, the only way I have come to realize this is by communicating regularly with autistic adults and parents of kids who are much older than my own. One great example is a very wise woman who herself has been diagnosed with Asperger’s syndrome. She has raised a wonderful son who has a lot of struggles with autism. He also is a regular competitor in marathons, and his mom posts wonderful photos and his race times to his blog on the Autism Hub. The young man only recently has begun writing the posts himself, which is great to see. You can get on there and comment to him. Tell him he’s a hero, that he’s doing a great job! His mom might answer, saying he is not yet responding ... but he is listening. Its very inspirational, and no matter how difficult some days seem with my son’s struggles, there are always role models like this to look up to and rely on for a positive outlook.
  • Another important thing I’ve learned is … Words Matter. There are plenty of highly charged words in the autism community. Only by spending hours in discussion with both autistic and neurotypical people – all with different views on the subject – can one begin to appreciate the power of words such as disabled, cure, nonverbal, spectrum, low vs. high functioning. There is, for example, the whole debate between use of “autistic person” vs. “person with autism”. I respect both views, and since I have learned the impact of these words I am careful in my use of them. Words shape our view of the world, and as a parent taking the time to understand the meaning of what we say can have a big impact on how we think of and view our family and its goals.
  • Words Matter in other ways, too. It is easy to think that when your 4 year old is not speaking at all, and is not responding to you even when you raise your voice, that he is not hearing you. Big mistake, that one. I have also learned that this problem becomes more pronounced as children turn into teens, then adults. Especially for those adults who do not speak! Not being able to speak is not the same as not having anything to say. Not being able to respond is not the same as not being able to hear what’s being said.
  • Which brings me to my last and probably most important point – positive outlooks and positive outcomes. I was advised by numerous folks when I first began to interact with the Hub bloggers – this is long before I started One Dad’s Opinion – to get over the “Woe-is-me” stage as fast as possible. There’s a whole world out there, a whole life to get to!
  • Having a Positive Outlook means…
    -Focusing on strengths over weaknesses.
    -It means zeroing in on opportunities for fun, for learning, and for interaction that will be meaningful to your child instead of lamenting that you may not be able to easily do things other families are doing.
    -It means adjusting your parental view to accommodate your child’s unique set of circumstances
    -The positive outlook that the parent holds will affect the behaviors of all the professionals and educators who work with the child.
  • Creating a Positive Outcome means…
    -Taking steps to educate yourself and understand about what challenges society will put up in front of your child, then working to address those challenges now and into the future. Have the courage to speak out in defense of your child.
    -Until some sort of medical breakthrough in understand and treating autism occurs, creating a positive outcome DOES NOT mean spending all of your family’s resources, especially time, on experimenting with the latest speculative interventions. It DOES mean providing any and all medical support necessary to ensure your child’s health.
    -Defining the term “Positive Outcome” can perhaps be the strongest influence on your parenting approach. If you strive to have a child that is “fully recovered” from autism, who becomes “indistinguishable from his peers”, then your approach is bound to be entirely different than if you want to teach him or her to be comfortable in their own skin, to be proud of who they are and the differences they bring. To me, a Positive Outcome is one where a child grows up to be secure in their own identity, and where their disability does not stand in the way of their happiness. This is what I wish for my oldest son.
  • I am not going to stand here and say I’ve got all this figured out. Parenting any child is a challenge. Many styles and approaches will be successful. There’s lots of ways to Land that Plane! (Reference Do’C’s video) But I feel like the opportunity to learn from and in turn give back to the wonderful people who are involved with the Autism Hub gave me an edge in settling on a parenting style that will work to Jason’s benefit. Anyway, that’s “One Dad’s Opinion” on how the Autism Hub can help develop a positive approach to parenting an autistic child.
    (Show Autism Diva’s Video here)

    I’d like to thank all of you for taking time out of your busy lives to learn a bit about the Autism Hub. I hope you all find the time to visit regularly and comment and interact as you see fit.
    Thank you.

Tuesday, January 8, 2008

Autism Hub Presentation

To those who are visiting after attending the Autism Hub presentation at the University of San Diego Autism Institute Winter Conference, I want to say: Welcome! Thank you for attending, and for showing an interest in the goings-on of the Autism Hub. I sincerely hope you apreciated our presentation and that you have a good feel for who we are, what we do, and why we do it. I encourage you to take look around the Hub and spend some time reading each blog. There is much to be learned by doing so. If you see things you like, have a question for one of the writers, or would like clarification on something, leave a comment for the author. Many of us are quite responsive, and would love to learn from your experiences as we share ours.

And to the Autism Hub bloggers - I, for one, was proud to represent you today. We showed some great videos prepared by some Hub veterans, including Estee, Kev, Autism Diva, and Do'C. Lisa/Jedi, Kassiane, ABFH, Jeanette, Casdok, Sharon, and Ken from Autism News Beat were featured in Autism Diva's video.
Bev from Asperger Square 8 and Dad of Cameron both shared in the presentation and acquitted themselves marvellously. Bev talked about autism self-advocacy on the internet as well as discussing many Hub particulars and her own brand of blogging, and James added his capable voice to the discussion of autism science on the Hub. Bev and HollywoodJaded created wonderful flyers for distribution (I'll try to post the PDF at some point so you can see it).

I am proud to have stood next to my two co-presenters, and proud to have represented all of the Hub bloggers' efforts over the years.

Over 2,000 posts. Over 60,000 comments. Attitudes changed. Policy affected. Lives improved. Science advanced. I am humbled to be a part of this.

I want to thank Dr. Anne Donnellan for providing us the opportunity to do this, and Shannon Harrington for her efforts in orchestrating a great conference overall.

Monday, January 7, 2008

USD Winter Conference Day One

Can I say enough good things about the folks at the USD Autism Institute? After attending day one of the Winter Conference, the answer is a resounding NO!

I am, as I was during the July conference, simply amazed at the ability of this group of presenters to make us think about our understanding of autism.

I would love to break down today's sessions with a scintillating discussion of Presumption of Competence, the "I Don't Know" tenet, and an expansion of the discussion of Movement Differences, but I can't.

I also would love to go on about how much I enjoyed the company of Bev from Asperger Square 8 during today's sessions. But I'm going to settle for this little blurb:

In one exercise, Martha Leary had us attempting some speech while limiting our use of certain common language conventions. This exercise was designed to help us realize how it might feel to have speech limitations. Bev explained to me afterwards how this exercise felt in relation to her typical efforts involved in conversation and speech. Contrasted with the way the exercise impacted my abilities, I picked up some new insight as to how it may feel to spend the day as an autistic person. Thanks, Bev, and I hope you enjoy San Diego as much as we enjoy having you here!

The reason I am limiting this post is: I need to be ready to do the Autism Hub presentation tomorrow! I still have some touch-up work to do, and I need to make sure the videos will play properly and my talking points are in order.

So goodnight for now, and wish us luck tomorrow. Bev, Dad of Cameron, and myself will be presenting about the Hub, and we hope to do all the Hub Bloggers proud!