Archive for January 2011
Funny that I’m following up a post on Thursday on how labels don’t matter with one saying they very much do. I’m allowed to be contrary though, this is my blog, after all.
One of the proposed revisions is to eliminate PDD-NOS and Asperger’s Syndrome as separate diagnoses and put them under the umbrella term of Autistic Disorder. This diagnosis is then sub-divided into 3 levels of severity. I welcome this greatly. I read the Level 1 category, and it is a perfect fit for Pudding, no ambiguity there. Why would there be ambiguity, you may wonder? Because Pudding was diagnosed the same month at two different places on the spectrum, that is why!
When I made the appointment with Dr.P, my husband’s employer helped to secure an urgent meeting with another specialist. We saw her and she briefly observed Pudding and asked us some questions. She felt that Pudding met the criteria for Asperger’s Syndrome, but urged us to go ahead with a multi-disciplinary evaluation with her team. This took place over a month, using many assessments, and eventually she was confirmed with the AS diagnosis, together with mild anxiety.
In the meantime we had the evaluation with Dr.P, who felt that the PDD-NOS diagnosis was the more suitable. That day Pudding was exceptionally non-communicative. We later discovered she was running a fever, which probably explained it. On subsequent visits, she has demonstrated her language capabilities to Dr. P. It really doesn’t matter though, she does have a pragmatic language delay for which she needs speech therapy, her support needs remain the same.
I don’t use the PDD-NOS diagnosis to describe Pudding, because it is too vague and wishy-washy. I’ve met children with PDD-NOS who present just like Pudding, and those who are much more like Kanner‘s definition of classic autism. Most of the time I describe her as having an autism spectrum disorder. I don’t feel that Pudding is significantly different to, or less autistic than a kid with a different diagnosis, but there are differences in the levels of severity and the amount of supports needed. At the age of 2 when she was diagnosed, her language skills were much more in line with her neurotypical peers, at 4 not so much. She may be more Autie than Aspie now. She has an autistic disorder, just like the other kids in her class, but there are levels of severity from non-verbal with injurious behaviours, to much milder social skills problems. These revisions take away the hierarchy of low and high-functioning, confirms that these are all the same disorder, and acknowledges the amounts of support required. As an individual progresses and requires less support, there is potential to move across the levels of severity while still acknowledging that this is the same diagnosis.
The new revisions also includes specific reference to hyper- or hypo-reactivity to sensory input. I’m sure I’m not the only parent who was never asked about their child’s sensory processing abilities until after they’d begun to seek a diagnosis. When Pudding was a toddler she began to spin around and bounce up and down to get the input she needed, but she would say she was dancing. No pediatrician ever asked me if my child liked to spin herself or objects excessively, or stare at lights and fans. I believe that including questions about this during routing well child visits would mean less kids getting missed until later.
I find another useful addition is this:
Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers) [my emphasis]
One of the great misunderstandings about autism is that the individual is unable to form a connection with anybody else. In our family unit, Pudding has very close and appropriate relationships with us all. It is when interacting with unfamiliar or rarely seen people that she struggles. Just because my daughter was hugging me and looking me in the eye when I raised my concerns to the pediatrician, does not mean she is without difficulties with other people. It is nice to see this acknowledged and included in the diagnostic criteria.
My blogger friend Laura at Life in the House that Asperger Built is concerned that some of these proposed changes will make it more difficult for females to be diagnosed, but I don’t agree. I think what we really need is more awareness amongst parents, pediatricians and educators that every individual with autism has a unique presentation, and it is important not to overlook any social communication difficulties or behaviors. The sooner we can get individuals to the right diagnosis, the sooner we can get them the support they need. We need to find our girls before they start “faking normal.”
I don’t think the word “aspie” is going to fall out of usage even though the diagnosis will be phased out. It has entered our lexicon, and many individuals self-identify this way. I’m much more likely to say Pudding is an Aspie rather than Autistic Disorder, level one, but I’m just as okay with “autie” too.
Are the changes perfect? Not by a long shot. But then you can’t possibly do full justice to something as complex as autism, or indeed any of the other psychiatric diagnoses covered in a few pages of the manual. Our knowledge of the human brain is growing all the time, and yet without using a baseline, we might never agree on what symptoms constitute a diagnosis. I know with my own two that children are hard to classify. And yet right now, Cubby doesn’t fit the criteria for DSM-IV or DSM V, Pudding fits both.
Whatever the label we give to people on the autism spectrum at whatever point they come into contact with a diagnostician, let us hope that we see an end to some of the inequity of service provision. Let us hope it makes it easier to get insurance companies to pay for proven therapies. Let us hope that the struggles and successes, the differences of my girl and those like her are acknowledged and supported a little better, rather than being feared or dismissed. We need a change and this is a start.
On Tuesday we had the second part of Cubby’s evaluation by Dr. P. This was a 1.5 hour play session, and though he tried to fall asleep in the car on the way there, he perked up, and was on very good form for the duration of the appointment. Cubby was very comfortable, possibly because he’d been to her office previously with his sister, and definitely because we stayed in the room with him. As with Pudding, Dr. P will write a full report for us, but she shared her overall impressions with us on the day.
I’m actually still trying to process my feelings. I think it will take a few days for it to sink in. My friends and family were eager to know the results, so I shared them. I’ll share them with you too now, though please don’t ask me what I think, because I’m still working on that. He is a typically developing toddler, and she has no concerns whatsoever about his development. She said she wished she had filmed the evaluation, as he exemplified social referencing and natural and spontaneous interactions. She told us she frequently forgot his chronological age (just under 22 months) due to his advanced language skills and attempts at humour and charm to get what he wanted (clearly my boy is the next George Clooney).
We talked for some time about our many concerns. His sensory defensiveness, his anxiety with unfamiliar people and environments, and lack of flexibility. All things that had unnerved me because they presented very differently with his sister at that age. She genuinely seemed more social than he did, but of course, the quality of her social interactions was and remains, quite different. I can have small conversations with Cubby, he seeks me out for this purpose. He has anxiety caused by his sensory issues, or sensory issues caused by his anxiety; but when he is comfortable and regulated, he is very social as Dr. P saw. Yes, in this way he is different to his sister.
In so many other ways though, he is just the same. When friends and family wondered what the doctor had observed, this was my response:
Precocious, intelligent, engaging, sensitive, sometimes anxious, cheeky, charming, adorable. Like his sister, only WITHOUT the autism.
He has some differences with the way he senses and perceives the world, but they don’t make the same impact on his ability to communicate and connect that they do with Pudding. We always felt that getting the label for Pudding didn’t change her, it changed us, and the way we related to her. Likewise, not getting the diagnosis for Cubby won’t change things. He continues to need therapy and accommodations to feel comfortable and function at his best. In that way, labels aside, my children really aren’t so different.
The great thing about our lifestyle is you get to meet so many people you otherwise wouldn’t. You make friends with those you would otherwise never have met. Sometimes you meet people at just the right time, and you know you’ll always be friends. You have just the right amount of things in common. Just the right blend of humour and support to make a difficult time pass easier, and good times more enjoyable.
The awful thing about our lifestyle, is that for every on of these Hellos, these new friends we welcome into our hearts, there is an inevitable Goodbye, looming menacingly in the distance. Somehow, I don’t know how, we get through it. The price we pay for every friend or loved one is to have another little piece of our heart beating at a distance. We tell ourselves it is okay, because one day we’ll visit and find that tiny morsel of ourselves in tact, ready to be close again. As much as we can logically prepare, goodbyes still hurt.
Last week we said goodbye too prematurely to my friend B, and Pudding’s friend E, who have now returned to England. I miss them both terribly, though I’ve spoken online to B almost every day. Pudding doesn’t fully understand. She asks to go to E’s house, and when I reply that she is gone to England, she responds that she wants to go too. If only it were that simple. I take solace in the fact that an introduction to moving away now will help pave our way to preparing Pudding for our move across the globe, just six months from now.
The smiles in those pictures from my Wordless Wednesday post today belie how much we miss them. I smile at the Hello that brought them into our lives six months ago, and gave Pudding a taste of true friendship. I put the pictures up this morning and Pudding came over to look, asking again to go and visit E. Again I told her we’d said goodbye, and she was gone to England. I want to go to England. Don’t want to say goodbye, want to say hello, she asserted. So do I, kid. My pieces there add up to a lot of heart, and it is growing all the time.
So I mentioned yesterday that Pudding had gone back to sleeping badly. Not just Pudding, but the whole family. Cubby was also waking several times in the night. One or both of the children would end up in my bed each and every night. Spectrummy Daddy got kicked out to whichever vacant bed he could find. I would endure a night of tossing and turning, kicking and having my hair pulled. After several nights of this, it wasn’t just Pudding’s behavior that had gone downhill. My tolerance levels were at an all time low, which was the very reason I needed that time out.
Following yet another success with positive reinforcement, I decided that would be our only hope for fixing this problem. That is easier said than done, however, as Pudding’s rewards have to be immediate and desirable to work. I couldn’t think of any motivator that would send her immediately to sleep. We’d worked through various sensory strategies to no avail. She likes her bed in a certain way to sleep (lots of weight for proprioceptive input), and we played around with sound and light but it didn’t seem to make a difference. Melatonin helped her to go to sleep, but she was still waking up several times in the night, and resisting going back to sleep when she did.
Behavioral theory dictates that there is always a reason for an action. In the absence of all other evidence, I concluded that the reason the kids were waking was because they wanted to sleep in our bed. I was reinforcing by allowing it to happen. We put a gate up, and before long Cubby awoke and screamed in protest. Seconds later Pudding was out of bed, crying and pushing at the gate. We live in a townhouse and we don’t have the most understanding of neighbors, so crying (screaming) it out is not an option we could go for in the early hours of the morning. I took Cubby, and Daddy took Pudding. Instead of bringing him to our bed though, I took him back to his own. It was warm in his room. The heating doesn’t work in his room, so we have a portable heater and I turned it right down. What is just right for him when he gets out of the bath is obviously too much in the night. Still, there was no way he was going to sleep while he still heard his sister, so Daddy and I traded off.
The temperature in her room was just right. I sat on the chair beside her bed, but soon she asked me to get into bed to cuddle. I abandoned any plans to return to my bed for the night, and climbed in. Yes, I was still reinforcing a behavior that I wanted to change, but I don’t make my best decisions while half-asleep. She pulled up the covers and snuggled in next to me. The two of us woke up a few more times in the night, and now I knew why. The temperature in the room was not so comfortable underneath the two duvets and weighted blanket that she needs to sleep under. I was hot and thirsty, and the first thing I did in the morning was drop the thermostat by 5 degrees.
The last couple of nights? They’ve slept better. We’ve slept better. We’ve gone the until 5.30 with no little people in our bed. For all I thought I’d considered every sensory aspect, I’d let this one go unnoticed until I’d actually slept in her room. Pudding has never told me when she is too hot or cold. Even when she has a fever, she hasn’t expressed that in words. Food can be too hot, the weather can be too hot or cold, but never has she described her physical state. Until she can actually interpret these sensations and communicate them to us, she relies upon us to puzzle them out for her.
Thanks(!) to the recent cold weather, Pudding and I have been doing lots of puzzles together. She and I do them in very different ways. I find the corners and the edges, then work my way around methodically. She picks up pieces, looks at them closely and visualizes which go together, making the picture immediately, then working out to the edges. There both valid ways to do a puzzle, but her way is about getting into the picture, and figuring it out immediately. My ordered, patient way means I sometimes the miss the obvious while looking for an edge piece. Sometimes her way is better, I need to get up close to a problem to have any hope of understanding it.
I’d love to say that our sleep problems are resolved, but while writing this, Pudding got out of bed to tell me she couldn’t sleep. In detective mode, I returned to her room. The noise from next door was the culprit this time, but she didn’t want her sound machine on. Oh well, even this won’t be an issue once we move. Eventually the neighbors became quiet. She went to sleep by herself and didn’t wake up until after 6. The sensory/behavior puzzle will probably always perplex me, but looking at things from a different perspective (the Pudding way) can help clear things up. And for the puzzle I just can’t figure out? I’ll sleep on it, given half a chance.
Pudding attends a preschool autism class which is based on a modified ABA approach to learning. Positive reinforcement is very motivating to her at this point in her development. In fact, any and all other discipline methods we have tried have been spectacular failures. She has a tendency to withdraw and shut down at the merest hint of disapproval or punishment, which is the very opposite of what we want. Nonetheless, positive reinforcement can be really difficult to apply at home. I prefer to use it for certain behaviors that interfere with her daily life. Some things I just allow to be, the kid has a hard enough time keeping herself together outside of the home, this should be her sanctuary.
When we do it, it works. Remember how easily she came around to vacuum cleaners? I do. Recently we went out to a restaurant. Atypically for an atypical kid, Pudding LOVES going to restaurants. For many parents of kids on the spectrum, going to a restaurant is so awful they just stop doing it. When we find a restaurant that can deal with all the allergy stuff, it usually goes great. Usually. Just lately Pudding and Cubby have both been going through a rough spell with sleeping. This particular day, we were all exhausted. After a heavy night, and a trying day, the last thing I felt like doing was cooking dinner for the family, so we went out.
Almost as soon as we walked in, I realized it was a mistake. When she is overtired, Pudding is soon overloaded. We pulled out the iPad and tortilla chips to keep her going. When her food arrived, she angrily pushed it away and demanded more chips. Had it not been for the fact that she hadn’t eaten much that day, I’d have probably conceded and given her the whole bag, but she really needed to eat something more nutritious. I gave her a chip, and put a small amount of chicken and vegetables on her plate. She again pushed it away. I took all the food away, apart from one bite-sized piece of chicken. She asked for another chip, and I pointed at the plate. She ate the chicken. I lavished her with praise, and gave her the chip. Next I added a little more chicken and vegetables to the plate. She again asked for a chip, and I pointed at the plate. She ate everything on the plate, so I gave her a couple of chips, and refilled the plate. We repeated the process until she finished her meal. Everybody got what they wanted, and we left the restaurant as quickly as possible- it wasn’t an evening to dawdle!
When it works, it works. Break it up into a manageable task, reward each step. Simple. Positive reinforcement is a great tool when a behavior needs to be changed. The thing is, if you try it and it doesn’t work, there is more going on than a behavioral issue. That is what I found out the next time I tried it. I’ll tell you about that tomorrow.