Proposed new definition for autism diagnosis?

Wow.... so much to think about!

Yesterday the NY times published an article about proposed changes to the diagnosis of autism in the new DSM (Diagnostic and Statistical Manual)...and the comments/blogs are coming in fast and furious.

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html

This morning, on the Today show, Dr. Nancy Snyderman explained this as an attempt to be more 'scientific' about the diagnosis, as opposed to the somewhat variable current system. The new proposal eliminates PDD-NOS and Asperger's as individual diagnoses, collecting those 'behaviors' under the umbrella term "Autism".  In answer to a question about whether this was a cost-saving measure,  Snyderman answered with the 'need to be more scientific' comment.

How will this play out in practice? Does this mean that the current PDD-NOS will not be diagnosed? Will kids like this be left out in the cold? I think not....these children are obvious in their challenges and behaviors. They are clearly not developing typically...and here I almost said that "No psychiatrist would ignore them" and then remembered the numbers of children aged 2 and over whose parents were told not to worry, the child would simply catch up.  So yes, perhaps, families will be told not to worry, just wait...and this at a time when we KNOW that early intervention is vital to change their course of development.

In effect, even if the purpose of this re-classification is not a cost-saving measure, eventually money will be saved and children will not get much-needed services. I am working with a family now and have been for 6 months and this little boy is well on his way to 'recovery'....and he is only two and a half. He would not have met the criteria for autism with this proposed definition. Where would he get intervention? He wouldn't.

Yes, I applaud the doctors for trying to become more 'scientific', but I hope in their zeal they consider the resulting policy changes that will accrue.

Science versus practice: Shouldn't that be "Science AND practice"?

Acting the part

One of the challenging things about DIR/Floortime is the way you have to put your whole self into the interaction: body, voice, mind and soul. Today when I woke up it was miserable out: Great lashes of wind-swept winter rain,  gray and cloudy, and it felt just like a heavy hat on my head. I realized that I just did not feel like being fun today....and I briefly thought about calling in sick.

But I didn't. I picked up my first kid and we started to play. I laughed, said silly things, he laughed, looked at me, and within a half-hour, I was feeling it...happy again! Fun! Funny! All my early-morning blues went away...

and so I relearned something I keep learning: even if you are not in a very good mood, acting like you are can make the difference between a low-energy day and a high-energy day.  Actually smiling and laughing can lift your spirits...even if you are not really 'feeling it' at first.

So to use the Nike logo: "Just do it!"

Improve the world, and your world,  one smile at a time.

Felt joyous today

One major point of DIR/floortime is to get to the joy in play....as opposed to play therapy, in which the point is to get to the pain....Floortime is all about getting a child to have that 'gleam in his eye'...meaning he is joyous...I work with many kids who love their alone time, their self-stimulatory time...when they play that way with me, I put my face right in front of theirs and mimic what they are doing, saying "Oh, this is fun!" and "Wow!". One little girl, after about 20 minutes of this, stood in front of me and yelled, "NOT!". Then she adjusted, telling me, "No, Ms. Sue!" I think she was telling me to get away from her....so I adjusted my intervention to acknowledge that she wanted me to stop, and then I lowered my intrusiveness. But my purpose is to join her in her joy, which involves manipulating Little People, biting the play birthday cake and play pizza (really biting; this child does not 'pretend' to eat...she puts pretend food right in her mouth and chews it....that is something I do NOT imitate!).

But by her yelling "Not!" and then saying, "No. Ms. Sue", she was telling me she actually knew I was right there with her, doing what she was doing. Prior to that, I had no idea if she knew I was playing with her or not. She was also telling me that she really enjoys her isolated play....and that it is fun for her. And I know that it is fun for her, but it is not productive fun play, like that of a typically developing child. A typically developing child will create new ideas in play, think about them and label them, and actually make a connection between what s/he did and what happened. This connection does not occur naturally in children on the spectrum.  To make this connection, their play must be supported, must be connected with emotion, and must be connected to joy.

And to do this I must myself be joyous....which is actually not all that easy for a grown-up whose children are grown. Even as a parent when my children were young, they played, and I often watched...occasionally played with them, but that was not necessary for their joy. They created it themselves.

And as an adult, with responsibilities, debts, illnesses, deadlines, bills, goals and so forth...where is there time for joy? We have love, friendships, dates,  entertainment, but rarely real joy. Is that true for you, readers?

How do you connect with your joy? How do you access it, and how do you demonstrate it? In Floortime, you have to be an actress...like an actress on stage...and sometimes this is hard for me. Are you demonstrative with your children? Your students? With your sisters, your partners, your peers of any type?

Today I looked into the eyes of the children, and saw their joy. That lifted me into joyous-ness, if there is such a word...


Let me know!

Trying to think and behave like a DIR/Floortime person

Thoughts about sessions today and past...I am good about following the child's lead, but apparently less good at matching my affect to the situation. For example, I videotaped a session for my tutor with a 9 year old, whom I've been seeing for almost three years. I've believed that by being overjoyed and loudly smiling, he doesn't even look in my direction. At one point in the videotape, he (he LOVEs the toys called "Little People") he started putting Little People in his pocket, while looking at me with a smile. I sat there and smiled back, saying "Oh, that's so silly! Those Little people don't belong in your pocket. They belong here in my room". He continued to look at me, smile, pat his pocket, then moved on to another game.

I was thinking at the time that I was responding to his silly action....but after seeing the tape, I realize I could have really acted silly....put my hands over my mouth, exclaimed, "Oh no! You did NOT just put my toys in your pocket! That's so silly and you know it. They belong here, not in your pocket!"

If I had, could we have created more circles around this action? He did smile at me, pat his pocket, and then moved on. If I had acted out my silliness, what would have happened then?

And so trying to use affect to encourage connection is more than just a loud laugh and smile. It is the process of using your whole body, not just your words,  to demonstrate affect. And it needs to be affect connected to the specific situation...he knew he was being silly, and I did not pick up on it until seeing the videotape.

And here are a couple of reasons why I did what I did and did not just get silly:

1. First, it is not my nature to respond with huge silliness.
2. My own exterior affect does not usually match what I feel inside.
3. I was thinking while this was happening about how I was going to get those Little People back.
4. I was also thinking this was not a big deal.

After years of succeeding based on my cognition, my ability to plan, to write, to prepare, it is hard to get back to totally childhood silliness. I think most of the adults around us have lost that ability. I think, I plan, I research, I know and then I act, instead of 'being in the moment' and respond with wild silliness.

Also, after years of being a teacher and a college professor, I have relied on my cognition rather than my emotions. Trying to get tha back is hard work.

This DIR/Floortime stuff is more complex than most people acknowledge. It is not just about playing with the child; it is also about being that child yourself.

Live and learn.

Some thoughts about doing DIR/Floortime

OK, so now I've been 'doing' Floortime for about three years and I am still learning. Yes, it's follow the child's lead, but it's follow the child's lead with affect...what kind of affect? We talk about 'high' affect...but making loud cheers and large gestures does not always capture the child's attention. Sometimes with a child it's a soft,warm voice....a clear interest in what the child is doing, a respect for his/her choice, some soothing "mmmmmmm" sounds.

So, here are some questions...do we 'match' the child's affect? What if his/her affect is muted, if it is flat, then do we need to use 'rich' affect with voice, face, gestures? What I like about DIR/Floortime is that it  is NOT prescriptive, but that also drives me crazy at times. Sittiing with a young man today who was loving blowing bubbles into the fan and watching them blow away...I sat with him, watched the bubbles with him, commented how beautiful they were, how good he was at blowing the bubbles, making swishing sounds as the bubbles blew away...I inserted myself into his pleasure, and got very little in return. A few glances at my face, a few turn at blowing bubbles myself,  But no real shared attention, no real joy.

As I write this, I am thinking of what else I could have done....I could have stood up, used my body to be 'blown away' like the bubbles, make it funny, made him laugh....I tried to match his affect (clearly he was enjoying this), and I had fun too....but how do I communicate that I love watching the bubbles blow away with the fan?  Next time, I will try to be silly with him.

And each session is like this...the therapist has to be intuitive, then use his/her own body, face, voice, gestures to get connection and then maintain it with the child. And since each child is totally different from the one who came before, a DIR/Floortime therapist has to be like an improvisational actor...one child is very attached to me, and I can 'read' him quite well, but his vocalizations and verbalizations have decreased this year. So I wait to see if he will try to use his words to communicate with me. But for him finding the right words is hard, and if I make a sound, he will merely imitate it.  And often if I wait too long, he gives up and goes to play by himself.

And on another note, following the lead of a child with autism often means spinning, flapping, running, giggling, and while those things may be fun for them, they are often not fun for me. So I have to pretend it's fun, and act like it's fun.  And even then he might not notice me....

So it is quite complicated...it's all about relationships, and we all know how complex those can be even if we speak the same language, grew up in the same town, live together, eat together, and share the same genes. Sometimes what we say inadvertently hurts someone, misses the point, makes them confused or frustrated, and we may not even know it.

So consider how hoard it is with a child whose affect is only anger, aggression, and otherwise is shut down.  Who cannot 'read' our face and our emotions, and who clings to rituals and routines. And who gets upset if we interfere with those rituals. Or if we even try to join them in those rituals.

We must remember in DIR/Floortime that our goal is engagement and connection at all times and almost at any cost....to ourselves. It's exhausting AND exhilarating when is connects....

And I am going to write more about this because I find it fascinating.

I would also love comments!

Sensory Issues: A Pilot study.

Most people in the field assume the self-stimulatory behaviors of kids on the spectrum to be some sort of sensory stimulation or protection from too much stimulation. Jean Ayers (1979; 1991) developed the theory that kids on the spectrum were neurologically unable to process sensory information correctly. Sensory integration theory is based on the understanding that neurological interference in processing and integrating sensory information is the cause of sensory and self-stimulatory behavior.  However, there is no neurological evidence (such as  Functional MRI) or other physical/neurobiological  evidence. Indeed much of the research is not randomized, controlled research.  Given how widespread the use of Sensory Integration in schools and clinics with limited evidence, that is astonishing.  However, the Occupational therapy profession is divided as to the effectiveness of SI treatment. Many OT's provide only fine motor therapy, while others embrace vestibular input,  tactile input, movement, and other sensory interventions in controlled situations to make an impact on the adaptive responses of their students. Students are given sensory diets in schools, weighted vests, brushing, upper body exercises, and other activities designed to either calm a child down or to increase his attentiveness. There are many variations of these activities.

Personally, I was not convinced that there was sufficient evidence of the effectiveness of SI therapy to embrace it. However, the field of OT seems to be attempting to create an evidence-based of SI therapy, and I think that is a good, and necessary, thing.

So I read with interest a recent randomized controlled pilot study in the American Journal of Occupational Therapy published this year. In this study, 37 children (32 boys and 5 boys) between the ages of 6 and 12 (mean age was 8.8 years old). 21 children were diagnosed with autism and 16 with PDD-NOS.  20 received the Sensory Integration therapy while 17 received Fine Motor interventions. The children were randomly assigned by a statistician who was not associated with the study made the assignments. Each child received a comprehensive occupational therapy evaluations, plus other assessments, such as the Neurological Screening Tests, 2nd edition, the Vineland Adaptive Behavior Scales, 2nd edition, the SOcial Responsiveness Scale and the Adaptability Scale of the Casey Temperament Scales.

The SI group displayed significantly fewer autistic mannerisms than the FM group, indicating the SI interventions may have an impact on core ASD symptoms. Significant postintervention differences in social responsiveness between the SI and FM groups. There were fewer significant  differences in the standardized tests, but the scores on the Goal Attainment Scales showed significant improvements. This suggests that these individualized assessments may more accurately assess a student's gains. There was a significant difference between the SI and FM groups on the ability to perform better on the Quick Neurological Screening Test, with the SI children making greater gains.

While this study is apparently statistically sound, there are concerns. This intervention occurred three times a week for 9 weeks, and there were no manuals for this intervention.  There is a strong need to conduct more studies of this type....creating an evidence-base for Sensory Interventions.

You can find the abstract and link to the full study here:

Sensory Integration: A Pilot Study
Susan

47 Years Ago Today

I apologize for not blogging more; I am thinking a lot about how to shape this blog and will continue to do so.

However, today I have something important to share. 47 years ago today, a friend, a child in my neighborhood with whom I played almost daily, perished in a house fire. My back porch faced the side of her house, and we had an opening in our fence (we took a couple of pickets out) so that my sisters and I and the other family and our moms could cut through to play (We all simply called it "The Hole"). (One dark night in the winter after all kids had gone to bed my mother and Marie snuck out to the ice rink my dad made in the yard to ice skate in private; I can still remember their shrieking laughter).

   There were four kids in my family: Joanne, Martha, Susan and Marian. There were four kids in Nancy's family: Nancy, the eldest, Jimmy, and two babies, Howie and Julie. Her mom was named Marie. Nancy had a diagnosis of mental retardation and went to a special school; she was my friend. I fought like hell on wheels with her brother Jimmy, but never with Nancy. When we rode our two-wheelers in their driveway, Nancy rode her large tricycle. When we had watermelon parties on our lawn, Nancy was with us. When we dressed up for our Easter photos, Nancy was always with us. I think in 1964 Nancy was 13; I was 12.

Dec. 8 is a holy day of obligation in the Catholic faith, the faith I was raised in. Because I went to Catholic School, we had the day off. My neighbors went to public school and they did not. Marie had taken Jimmy to the 7 o'clock Mass and they were walking through my yard, "cutting through" to home. They arrived to see smoke curling up and under the eves. My sisters and I were staring on our back porch, scared to  death, until my mother rushed us indoors. Then, she ran over to Nancy's house to grab the two babies that the dad had thrown out the door into the snow. He scrambled back to open the door to the house, and it was locked. Nancy was still inside, in bed, alone. He was enraged.

He banged his fists against the locked door like a crazy person, and Marie and Jimmy ran over to do the same. The fire department said they received numerous  911 calls that day, evidence of a strongly knit neighborhood where everyone watched everyone else's kids.

Apparently when the fire department arrived, they were told that Nancy was in her bedroom at the front of the house. Although the dad was home, Nancy always waited for her mom, Marie, to get her out of bed. And also apparently the second floor was full of smoke.

Later that morning, after they got the fire under control, a firefighter took her out in a body bag; the local tabloid newspaper printed a photo of Marie, her mom, collapsed in two firefighter's arms. I only glanced at the photo; we children weren't allowed to look. Marie's grief was total and the photo was offensive.

The dad's knuckles sustained many cuts and abrasions from banging in futility at that back door; apparently, the cuts and scrapes did not heal for years....

The marriage soon ended; and Marie moved with her remaining children: Jimmy, Howie and Julie to a neighboring suburb. The daily games and parties disappeared. They sold the land and someone built an apartment house. The 'hole' in the fence was repaired. No one 'cut through' ever again.

Jimmy, Howie and Julie have grown up, as have I. I think it is not a coincidence that shortly after that event, I announced my plans to become a special education teacher. And I wrote an article while I was on the faculty of Lesley  about our families and friendships published in the Lesley College Magazine. To write the article, I went to interview Marie, elderly and inform. Her face glowed with happiness as she reminisced about those early years with her friendship with  my mother and our kids' adventures. And she said, "And you always took Nancy with you"... And she repeated several time as if it were a miracle, "And now you want to write an article about my Nancy".

And a couple of years ago, on Classmates.com, I received a simple, enigmatic note from Jimmy: "Susan, thanks for all you did for Nancy".

I did nothing but be a friend.

I think we may have been the first "inclusion" neighborhood in the United States, and it was formed with the support of our mothers.

I think Nancy's life made me what I am today.

I still have a couple of copies of my article at home; let me know if you want one. I might try to scan it and put it online also!