Friday, July 04, 2008

Joining the Wellsphere Health Bloggers Network

A couple of weeks ago I received an offer on my blog email (which I must confess I don't check very regularly) inviting me to join the Wellsphere Health Bloggers Network. I thought about it and decided to join up. You're thinking "So?"

The reason I decided to accept was that this offers a potential opportunity to discuss autism with a wider group of readers outside of the autism community. When I first started this blog, I expected that most readers would be from the community of those touched by autism. While there is a wide spectrum of opinions within this community, there is - to really stretch a point - at least some common basis of knowledge and understanding about ASD. Outside of this community, this probably does not exist.

Unfortunately for the Bear, she lives in a society that not only does not understand her, but one that is often exposed to extremely negative perceptions about ASD and therefore - by implication - her. What society often sees is snippets of information - often inaccurate or incomplete - that suggests ideas such as 'autism is worse than cancer' or that autistics lack some of the features that make us human (um, then what does that make them?), or - my personal favourite - that "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite." That last one was actually written in a major Canadian newspaper by a respected columnist, quoting someone from F.E.A.T of BC, and accepted without question or critical comment.

Even within those who work with autistics and would hopefully know better, misunderstandings and misperceptions are not exactly uncommon. As an example, in the case of Carly Fleischman, I was disappointed by the amount of surprise, and especialy the amount of initial skepticism and/or disbelief of some who worked with her. I'm also disapointed by the unwillingness of some who should know better to consider that if Carly is an isolated case, then this may be due to lack of opportunity rather than lack of potential. I'm a believer that expectations influence results, and low expectations will often be met.

To be clear, I'm not suggesting that society should be sheltered from the trials and tribulations of ASD. I also understand - although I strongly disagree with - some of the excesses spoken by 'autism advocates' to paint a bleak picture to gain support for autism services. But how does this negative advocacy help society to accept my bubbly, smiling, happy little girl for whom she really is and is in the process of becoming?

As I wrote elsewhere,

"I believe that one of the things we need to work towards is ensuring that autistics are ‘just another group’ towards whom tolerance and acceptance is extended, accepting autistics for who they are now and for whom they will become. Regardless of whether one takes a neurodiversity perspective, a ‘cure’ perspective, or is within the great swath of opinion in between, we all have an interest in having society accept autistics, and accept and endorse the right of accommodation where required."

To my mind, the way that we will get there is through a greater understanding of ASD and autistics. As such, I decided to take the opportunity to potentially reach a wider audience, and to offer a more balanced point of view. I know that many within our community do not share all (or any?) of my views, and I am no more than one voice among many. I will be clear that I am not a spokesperson for autism, but instead am offering an opinion. But I will take this opportunity, for the sake of my daughter and others like her. And if you disagree with my posts, well, that's what comments are for.

Tuesday, June 10, 2008

Normal Female

As part of the process and follow-up we went through to secure the Bear’s ASD diagnosis, we were eventually offered access to genetic testing. My first post was about autism and genetics, in which I suggested that while ASD has clear genetic links, there is evidence from MZ twin studies that more than just genetics or epigenetics is required to explain a significant proportion of ASD cases. As such, I was interested in what such testing might find.

I’ve also previously written some thoughts here on pre-natal genetic testing, if anyone is interested. But at this point, genetic testing of the Bear was presumably past most of the potential moral hazard issues. As such, I figured, why not? If any issues were to be detected then at least we would know and could plan for them.

So, last summer the Bear and I met with a Doctor who specializes in genetics and apparently ASD too, and went through all of the family history. The Doctor explained what they were looking for - in some cases particular alleles, in other cases duplications or omissions of genetic material – and how the testing would be done, and we agreed to go ahead. Some of the testing was to be done in the U.S., so we also had to fill out a form to get OHIP to cover this out of country work. It was approved, and we could proceed.

We waited until September to get the blood work done, as we wanted to combine it with a couple of other tests (regular stuff – nothing fancy). Let’s just leave it at saying that pinning the Bear down to draw blood is not an easy feat (she is quite strong! And feisty!), so we prefer to do this as infrequently as possible. We managed to get the blood with most limbs still intact (ours, not hers – she was fine), and off went the samples to various locations in Canada and the US for the genetic testing.

Four months after the blood draw the Hospital for Sick Children in Toronto (AKA Sick Kids) had announced another one of those
‘breakthrough autism tests’
. We thought that we had probably missed this one, but this test too was performed.

It took several months for all of the results to come back, and last month I went in for a meeting with the Doctor to discuss the results. The test interpretation read:

"Microarray analysis of 622 loci using 1887 BAC clones for the subtelomeres, pericentromeric regions and known genetic syndromes (see attached list) detected no abnormalities in the DNA of this specimen. Thus, this is a normal microarray result showing no alterations of the loci tested."

All tests were negative. The Doctor told us that further research was being conducted, and that we should come back in about five years to try again. I wasn’t surprised at the results, but I was a bit relieved. Future tests may ultimately detect a genetic variation that caused the Bear’s autism, but I would not be surprised if the result instead is the identification of a genetic vulnerability rather than a genetic cause. Personally, I lean to immune/auto-immune causation in her case, but we’ll see.

The relief came from the fact that – at least so far – genetics has not proven to equate to destiny. Some may seize upon that statement as indicating that I’m a ‘curebie’. While I don’t disagree with those who are seeking a cure, this is not what I mean. FWIW, the Bear has been autistic for such a formulative period in her life that it has shaped her development, and I believe it will always be a part of her. But autistic thought and outlook to my mind is not the same thing as some of the difficulties associated with autism, and to the extent that these difficulties are not genetically based, they may be open to amelioration.

For those who need an example, the Bear constantly touches objects as she passes them, not in an investigative manner, but in what appears to be an attempt to generate location-related sensory input to be able to understand herself in relation to her surroundings. If so, then this suggests that she has sensory integration issues related to physical self-awareness within her environment, which - if anyone has read my 'ASD as a Developmental Disorder - A Suggested Neurological Underpinning' post – may ultimately result in significant further consequences related to her interoceptive capabilities. If so, then ‘fixing’ this particular SI issue could ultimately lead to the potential enhancement of other neurological capabilities (sorry, but you have to read that post to understand this – it is far too involved to fully explain here). It wouldn’t change who she is, but it could potentially add to her capabilities. And if I’m wrong on this, ‘fixing’ this issue would still enable the Bear to more capably and comfortably understand and maneuver within her environment, which presumably is a goal to which no one would object.

Anyway, I went away with a copy of the tests, and sat down that night to read them in detail. On the cover of the results was an explanation page, and in the space next to ‘Result:’ were the words ‘Normal Female’. This pretty much sums it up for me. The Bear is not neurotypical, and for a while we had some issues accepting this. I'd say that today we are much further along that path. We work hard to help the Bear become the best and most capable Bear that she can be. But along with this is an acceptance of who she is - our adorable and happy little girl. She is our everyday normal daughter.

Thursday, May 01, 2008

Feeling A Little Optimistic

From my last post, one might conclude that I’m feeling a bit pessimistic these days. Instead, I’m actually feeling a little optimistic. The reason is related to the Bear’s education.

Just to get the point out of the way, if anyone has an issue with IBI, my thoughts on the Bear’s program are here. Read this before you raise points about all the negative IBI practices that I’ve previously stated that our IBI provider does not follow.

Longer term, I’m still more than a little worried about the Bear’s education. The powers that be will probably try to boot her out of her IBI program when she reaches Grade One. IBI support does not automatically expire at this point, but rumour has it that the criteria become more stringent, as the intent is to hand over responsibility to the school boards. I’m also more than a little concerned with the possible direction that the School Board may want to take. They may want to move her to an ASD program in a different school. Our preference is to keep her local and part of the community, but that also depends on the local resources that are available (will there be an EA for the full day? One-on-one or shared?) and whether the educational opportunities will be better at another location. As well, what happens in the summer? Does the school have a program? If not, is funding available for other programs, or do we have to pay?

But for the short term, things are actually looking okay. I just had the regular IEP meeting with the IBI provider, and the Bear is making some progress. This year she rated on ABBLLS-R in nearly half the categories, vs. last year’s assessment, when she did not show up on the grid. She is also showing improvement in self-help skills, responding, some imitation, requesting, gross and fine motor skills, and social interaction. She can also match on identical and non-identical objects, pictures, and colours when she chooses to. So far so good. But the real optimism comes from the progress to date and the goals for the Bear’s communication abilities.

The Bear is non-verbal. She does make a variety of sounds, a couple of which have meaning, but they appear to be more mood related than specific words that are used to communicate with us. Despite the absence of speech, she does a reasonable job of letting us know what she wants, often by taking our hand and walking us to whatever she wants. including walking us over to sit down and play with her. She is also able to make choices when we present her with two or more options, e.g. juice vs. ‘(rice) milk’, or different DVDs to watch.

The Bear had also demonstrated an ability to use PECS to communicate. We used to use this at home, with a few different pictures. We stopped when the Bear destroyed the pictures through twisting, folding, and chewing them. Both JK and IBI were also using a small range of pictures, but with no formal program in place.

I started pressing earlier this year for the Bear to start learning the alphabet and numbers, so that we could start to teach her to read. I also expressed a desire to move towards acquiring a Communications device, so that we could begin to teach her how to communicate vocally/electronically. Unfortunately, you can’t just buy a device and put it in front of her (well you can, but….), or we would have done that long ago. She also needs to know how to use it, which requires some specialized teaching. Our issue was that we no longer had access to an SLP, having slipped between the gap between the 0 – pre-JK years (under the auspices of the local ASD support agency) and Grade One and up (the school board). We discussed it with our IBI provider, but they appeared interested but non-committal at the time, given the issues the Bear appeared to be having with matching (capable but no consistency). For obvious reasons, matching could be considered a pre-requisite for PECS Stage 3 (discriminating between pictures) and above. I knew that the Bear could match, having seen this skill demonstrated regularly, but she also needed to be consistent.

What a difference a couple of months have made. The IBI program altered their teaching slightly, and it turned out that the Bear’s ‘errors’ were in fact non-attempts and getting side-tracked in manipulating the pictures or objects rather than applying them. When motivated, she is quite capable of matching at will. IBI also increased their use of PECS after a bit of a hiatus, and the Bear showed that she was quite capable of communicating this way.

The other difference was Carly Fleischman. For those who have not heard of her, Carly is a 13 year old non-verbal girl with autism who has learned to communicate by typing words into a laptop that the machine then ‘speaks’. Just as importantly, Carly has demonstrated that you can’t judge the potential of autistics only by the capabilities and behaviours that can be readily seen. To my mind her major contribution has been to change perceptions – at least among those who are open minded - of what autistics are potentially capable of, given the right support, environment, and assistance. I have long thought of the Bear as another ‘Carly’ in the making, even before I knew that Carly existed. But Carly’s very public demonstration of the ability of autistics to think, understand, show emotion, and communicate (all of which should have been apparent - or at least not easily dismissed – by those who were paying attention) reinforced both my desire to push harder for a communications strategy for the Bear, and made it much easier to make the case to others – if they weren’t already starting to move in this direction in response to Carly’s example.

The net result is that a major part of the Bear’s learning is now focusing on communications. The IBI school has bought a Talk Board (pictures that ‘speak’ when pressed) to enable them to teach her how to use this. They are also working on strengthening the Bear’s PECS skills, and she is doing quite well. On Tuesday, in over 600 communications with multiple cards requiring discrimination she required only two prompts – both were related to the Bear wanting to turn on a video without first using the PECS card to request this. Given that she never had to use the card in the past, this was understandable, and once she knew the card was required, she adapted to that as well. Since then she has been progressing very quickly, traveling to communicate and communicating with the correct person in changing situations. The next step is to make a PECS binder that she will keep with her in JK and home, as well as at IBI. As this is mastered the Bear will be taught to use the Talk Board, and when she is ready we can transition to other technologies and a keyboard. In the meantime there will also be more emphasis on teaching her the alphabet and other skills to get her ready for this.

JK is also very much in alignment with using PECS. The Bear’s EA has had PECS training in the past, and has asked to visit the IBI school to see how they are using PECS with the Bear, in order to use the same techniques in JK. She is now enthusiastically waiting for the binder to start using it, as are we to use it at home.

Finally, another cause for optimism is how well the Bear is fitting in at school. For a while she was off on her own with the EAs for significant periods of time, duplicating a lot of the work that the IBI program was doing in the morning, and reducing her interaction with the other children in her class. The IBI program head did a site visit to the school, and recommended that the Bear be more fully integrated with the rest of the class, and the teacher and EAs agreed. The Bear is now more involved, and even has a couple of girls who are friendly and interact with her. When she is at the computer many of the other children apparently gravitate over to watch and take an interest in what she is doing. She has been well received by the school as a whole, and when the IBI head did her site visit she was very impressed with how much the rest of the school knew and regarded her – “They just love [the Bear]”. At different times she interacts with children from other grades in various activities, and everyone apparently knows and likes her. This to me is more good news, as one of the goals of having the Bear enrolled in JK was that she would fit in early and be accepted, rather than join the school later and potentially be perceived as an outsider.

So, there appears to be progress, we have a clear direction to follow and alignment among all concerned, and the Bear is already adapting well to the new focus. As such, I am feeling a bit more optimistic these days.