Sunday, January 15, 2006

DOES THIS SOUND FAMILIAR?

I thought that the comments to my last post would have centered on the limitations of the California statistics we’ve all been looking at. But there really was no argument that the numbers can’t really be considered a reliable indicator of autism prevalence in California. What I found interesting is how the conversation steered itself to both fears that the decreasing numbers would be used to cut needed services, and the explanation that changes in the way the services are being delivered actually accounts for the downward “trend.”

As ever, we can count on one issue to unify all parents of ASD kids: the less-than-adequate delivery of services, particularly by our schools. I wrote before about a positive change of attitude we encountered in our local school system, but attitude doesn’t get the job done. The problem is getting real assistance to the teachers and aides on the front lines.

The universality of this problem was underlined recently by an article from across the big pond. The Scotsman reported on a study by Glasgow University to assess the implementation of a mainstreaming policy. That study showed that “nearly a third of local authorities are having difficulty including children with special needs in mainstream secondary schools.” Of course, that should not have been a surprise considering that “fewer than half of Scotland’s councils had carried out the necessary preparatory work in order to implement the policy effectively.”

The frightening part of the Scottish report was its drawing a link between an increase in the numbers of autistic students and a rise in “indiscipline” in the classroom:
The report said: “Children on the autistic spectrum may exhibit behaviour that is incongruous and challenging, and which severely disrupts teaching and learning.

“It is possible that the perceived rise in the incidence of challenging behaviour in schools, and indeed in the incidence of social, emotional and behavioural difficulties, is related to the reported increase in the number of children on the autistic spectrum.”

One council official told researchers that the worst part of the mainstreaming policy was the “insufficient recognition of the challenge facing schools in dealing with behavioural issues”.


The article also cited a recent report by the General Teaching Council for Scotland that made a similar link:
Teachers said they were not given enough support to deal with pupils with behavioural difficulties, and warned that some of the indiscipline displayed by children with special needs affected the learning of their classmates.

Sadly, the schools seem to be looking on the problem as a failing of autistic children rather than a failing to address the needs of autistic children who are being mainstreamed. Still I was struck by the Scottish teachers’ insistence that much of the problem lay in inadequate support.

Inadequate support is something my son’s teacher, aides, and principal understand all too well. And their situation is not unique; I hear similar complaints from nearly everywhere. Our teachers are simply overwhelmed with the challenges presented by autistic students.

That prompts me to ask: why are teachers suddenly overwhelmed? Did teachers suddenly get stupid? Or has there really been either an increase in the numbers of autistic children entering our schools or a qualitative leap in the severity of autism in students?

7 Comments:

Blogger Kristina Chew said...

This is what I have sensed from playing the IEP/services dance with the school district: There seem to be more students "classified" on the spectrum than ever and not because of "better diagnostic ability." Not very long ago, my son would have been sent off to an institutional setting at the tender age of two perhaps (and I have heard of residential placements still being suggested for children as young as three)---so school districts may well be finding themselves having to educate children who would never have seen the likes of a public school classroom before.

How about this: Is it that now parents are told that the services available for their children are in a public setting--in a public school, or (if the child is under three), via a county or state or other local governmental agency--and that school districts are now "able" to handle and adequately teacher disabled children? Are school districts simply claiming expertise in teaching kids on the spectrum that they do not have and that they cannot adequately fund? (Not that they admit this.)

Teachers who are on the front lines can see the reality of how difficult inclusion can be for some kids; how specialized the teaching must be for some ASD kids. (Meanwhile, bureaucrats are as ever in charge, most so of the budget.) Teachers need adequate and continual supervision by real autism experts who understand our children--you are more than right to say that "attitude doesn't get the job done." But holding those who oversee our children's education and future can.

1/16/06, 1:38 PM  
Blogger SquareGirl said...

I was a teacher, my sister is a teacher and many of my friends and family members are teachers. Anytime a new study comes out supporting the rise of autism, lack of supports, etc., all the teachers I know say "uh, we could've told you that". Studies are important, but talk to enough teachers and you will probably get far more conclusive evidence than by looking at all of the studies that are currently out there.

Oh, and I have some HORROR stories about what the district would do when I worked as an SDC teacher...but I'm as a parent who has had to deal with the school system, I don't have to tell you!

1/16/06, 6:20 PM  
Blogger SquareGirl said...

By the way, thanks for this post. It's an issue that needs to be examined.

1/16/06, 6:23 PM  
Blogger Kev said...

Sadly, the schools seem to be looking on the problem as a failing of autistic children rather than a failing to address the needs of autistic children who are being mainstreamed.

Indeed.

I'm certain there's been an increase in numbers of autistic kids - lets not forget that it wasn't that long ago that the diagnostic criteria for ASD was widened considerably (early 90's) and that will have had a significant effect on the numbers of kids who now qualify as autistic.

I also think that the rise in the UK of the idea of mainstreaming has played a significant part. Its the law in the UK that a child must be mainstreamed unless the parents specifically request a special school. Its no wonder that teachers are seeing more ASD diagnosed kids.

All that said, I'm primarily concerned with two things in this report. Firstly is the alarmist nature of attempting to associate autism intrinsically with behavioural issues and implicit violence. The teachers who say this are badly generalising and instilling unecessary stigma regarding autism. Sadly, this is becoming a common feature from UK teachers - not just in relation to ASD.

Of course they are having trouble including ASD kids - our state schools are poorly funded and SEN training is way down on the list of priorities for most heads. The article again tries to spin this into a menacing undertone of threating kids who aren't controllable but the onus is on gvmt at local and national level to address training for teacheing staff. Its not for teaching staff to make vague ominous noises about things they clearly have little understanding of.

The second thing that concerned me about this article was the fact that they elected to quote Bill Welsh as a representative for the autism community who elected to stoke the fires of generalisation and push his own pro-biomed agenda. Why the hell The Scotsman didn't go to the NAS who at least can be trusted to speak from a position of knowledge I don't know.

1/17/06, 1:43 PM  
Blogger SquareGirl said...

I like this discussion, as it goes along the lines of what I have been trying to say to people when they ask me if I think the actual number of children on the spectrum is increasing or the number of diagnosis are increasing due to increased awarenes, so I am going to chime in with my 3 or 4 cents, (still can't keep up with the inflation). Every General Ed. teacher I speak to say that that they have more kids on the spectrum in their class, school, etc. every year. While I'd like to think that this is because we are simply becoming more inclusive, I highly doubt this is the case. My background is in ABA and I came to work as a teacher for a SELPA class of children on the spectrum...I did not apply...the special ed. director recruited me from an ABA agency. While I was teaching I got many many calls from other districts in an attempt to get me to come to their district. I found out that there is a HUGE shortage of teachers of SDC classes (specifically autism) in Southern California, partly because of turnover, but mostly because new needs caused districts to have to create new classes every year. When I taught, it was the second year that the district had an autism classroom...that was 6 years ago and now they have even more. In addition, they have more kids mainstreamend than ever. Oh, and in case the thought crossed your mind, it is NOT because people were moving there because of the district. I guarantee that. Oh, and also the districts overall population was not increasing. Whenever it came to getting my students included in school activities or mainstreamed, I always felt like I was doing PR work with the other teachers (something I am sure many parents can relate to), as even though according to the IEP, "It's the law", general ed. teachers had no obligation to take the student, and as wonderful as some of them were, they simply had no idea how to teach or communicate with a child on the spectrum.

My caseload continues to grow every year, even though I am getting better at saying no and not spreading myself to thin.

I along with many other teachers do not need a study to show that the numbers are increasing. THEY ARE. I am quite sure we will not need a study to show when the numbers actually decrease, but I can tell you this, all of my teacher friends have stopped getting flu shots and given up their spicy tuna rolls and they have NO family members on the spectrum.

1/17/06, 6:21 PM  
Blogger Kev said...

While I'd like to think that this is because we are simply becoming more inclusive, I highly doubt this is the case.

I highly doubt it too. I didn't say that was the only reason, I said that was just one of a variety of reasons. Other reasons include the huge change in diagnostic criteria.

Oh, and in case the thought crossed your mind, it is NOT because people were moving there because of the district. I guarantee that.

I'd say that certainly plays a part, albiet a relatively small one.

I along with many other teachers do not need a study to show that the numbers are increasing. THEY ARE.

The latest release figures from California appear to support you in this.

I am quite sure we will not need a study to show when the numbers actually decrease, but I can tell you this, all of my teacher friends have stopped getting flu shots and given up their spicy tuna rolls and they have NO family members on the spectrum.

Proof indeed. I can certainly see how a straw poll of your colleagues is a much firmer basis for an opinion than a scientifically controlled study.

1/18/06, 4:18 AM  
Anonymous María Luján said...

Hi Kev
You say
I can certainly see how a straw poll of your colleagues is a much firmer basis for an opinion than a scientifically controlled study.

Well, the problem I see with this statement is that epidemiological studies, at the best of my knowledge, have a lot of flaws related to the questions they do, the data they use-affected by several of the same things that educational data-diagnosis criteria, diagnosis change-and the conclussions they obtain. If we accept that there are a lot of things we do not know about ASD today, how the questions in an epi study are going to do properly? Besides, epi studies quantify a risk, but cant discard or prove a causal at a population level, considering the exposed people equal in front of the insult.
It is true that diagnosis change can help in the increase of the numbers, but there must be concomitant changes in the other diagnosis-MR, OCD, etc- at least in part to explain this, and also more access to the diagnosis for the children. The change must be nearly parallel if we accept this as a major contributor to the increase. And ther are problems with the other diagnosis change and more perception. In general, it is reported that ASD cases increased more faster that other diagnosis, that also increased, no decreased.
The general perception in the last 15 years is that the number of children with neurodevelopmental problems ( since ADD to ASD) HAS increased, talking with teachers of kinders and schools. Not ony in USA, but outside also. Partially I think that increase in diagnosis and more attention to children development can be assigned to part of the increase. But I also think that a REAL increase took place. The problem is that this REAL increase is very difficult to prove with the tools at hand, because can be PART of several collaborators to the increase. I do think that this REAL increase can not be assigned to only ONE factor as causal but to the combination of them at an individual basis, including genetics. Thimerosal and vaccines have been the focus of the controversy. What about the increase of chemical contamination and chemicals use(air, food, water), the increase of infections in newborn, toddlers and children, the overuse of antibiotics and the increased resistance of bacteria to them, the amount of strep infections and other wild infections-herpes, other, besides vaccines- all of them and with all their components- at an individual level? I accept that scientific evidence does not support link, but the scientific evidence has been designed/studied considered all the exposed equal and only analyzing ONE factor-thimerosal for example in vaccines-, and we know that the autistic children are different from birth because of genetics and there is growing evidence of ASD as of multicausal nature and individual presentation.
Therefore, how can we prove or present evidence of a REAL increase, masked for a change in diagnosis and diagnosis criteria, populations changes and others, that can not be assigned to one cause but probably is multicausal in root, including genetics, and of individual presentation? How the actual design of TOTAL number of REPORTED ASD cases can be analyzed if the epi studies do not analyze the multicauses TOGETHER, but separated and even more, if do not analyze the supposed contributors as potential causes because there are not enough studies to support the incidence of this in ASD? How can we do this today, if there are causes/collaborators we do not know? Then How can this REAL increase be proven with the actual scientific approach?
I think that only with the -parallel to epi- basic research on ASD, enough information about environmental insult and genetic/epigenetics in ASD will arise to design adequately studies that can prove/disprove this.
María Luján

1/18/06, 6:58 AM  

Post a Comment

Links to this post:

Create a Link

<< Home