latest report out of CA - Autism caseload doubled in 4 years

I did read your deleted posts. I appreciate that I can look to you on the bb to find the latest information about autism.

We have discussed this before and you may remember that while I do believe there must be an increase in autism and we need to find the cause. I also believe that now that it is a spectrum disorder, kids on the very mild spectrum are being given an autism diagnosis where a decade ago they were diagnosed as ADD. I still believe that an autism diagnosis should be given to help children who are seriously affected. But the studies are being skewed by the prevalence of some doctors who diagnosis every ld child as autistic. And my comment comes as a parent who has been to both UCLA Neuropsych and UCI (Irvine) with very little trust in what those doctors had to say to us.

I will take this opportunity to say that I want all valid information and concerns of parents to stay on this board. And, I want the destructive elements to channel their anger in a more appropriate way.

Have you ever been in contact with Michael Robinson? He is an advocate based out of Hawaii, who does tremendous advocacy work for autism and also lobbying. I can’t remember his email of the top of my head but you could try doing a google search for him.

He is from California I believe and is still heavily involved there.

Moms

Dad

I have been following the problems with the boards. I do not participate in the boards usually but like many others have learned a lot from them.

I do not know but one guess about why your posts are currently being deleted may be the topic. Last year a mother of a friend of my daughter was trying to find help online about a question related to her daughter. Her daughter has autism. I suggested that she try to Ask LD OnLine or Ask Dr. Silver.

The good news was that she did do that. The good news still is that LD OnLine did reply very quickly. Their reply, however, told her that LD OnLine’s focus is LD and ADHD. They said they did not want to answer a question outside their expert base and the focus of their website.

That really is good news in one sense since they are doing what they say they will do and they are not trying to stretch into other areas that are really not their area of expertise but it really did not help my friedn. They referred her to a group that had more information about autism but my friend did not think that group could really answer questions about disability and school. She is still working on finding a solution to her problem but I could see LD OnLine’s point of view.

So my guess is…..since comments seem to suggest they are watching what is posted more closely now….they are more likely to remove content that is not related specifically to their site as well.

That is not to say that censoring is good and I do hope they find another solution so that the boards can be maintained.

Hadn’t thought of it in quite that manner, that developmental delays problems would be considered off topic. I suppose only the site administrators would know that for certain.

It is interesting that other “medical” problems would be considered on topic however, and there is somewhat of a crossover between the DD’s and the LD’s, in as much that the process for obtaining services from the schools are the same, and our children compete for limited resources, including the Sped teacher’s time, limited slots for aids, and expensive assistive technology.

Still, thank you for your insight. Gave me another angle on the situation to consider.

My son had neuropsych eval and the neuropsych suggested a pediatric neurologist to see if that gave us information about why a bright, verbal 9 year old child could not read. In a 15 minute office visit, with a handful of questions and a black light run over his body, the diagnosis was autism (Aspergers). We could put him in the hospital for a sleeping EEG and the doctor knew a good boarding school. We were out of there like bats out of hell.

That makes sense, but I hope whoever is monitoring this will consider that, while this board focuses on LD and ADHD, many children with these dx’s also have autism spectrum characteristics, and Dad’s posts on autism are extremely helpful and interesting to many of us on this board.

Definition under IDEA for a child with a disability includes HELLO?

3) Child with a disability.
(A) In general. The term `child with a disability’ means a child —
(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (hereinafter referred to as `emotional disturbance’), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and
(ii) who, by reason thereof, needs special education and related services.

AUTISM.

Let get this straight ONLY parents of kids with a specific learning disability can frequent this board? Or is this board for parents of kids who are in need of and are provided with special educational services??

So,please refer to this list and remember only SLD is considered a learning disability?Give me a break. Tell THAT to the parent of the autistic kid,who’s IEP I am going to in the morning. The same kid who’s getting the shaft,because they don’t want to provide services appropriate for him to “LEARN”

I frequent these boards late at night and in the wee hours when my thyroid medication is off balance and my sleep is messed up, so I see a lot of things before the disappearances and once even during.

Dad, yes, your posts *were* here. I read them, with interest, as usual.

Then autism is a topic that tends to attract nasty and hurtful commentary from you-know-who. I read some of this commentary and reported a few posts that were well over the line.

The board administrators are NOT picking on autism; you’re still welcome here, I am positive.
What they are doing is deleting all obscene, insulting, hurtful, and false-identity posts as fast as they can, to prevent the place degenerating into a flame war.
Since you-know-who picks on autism and medication most, then your posts are most likely to be attacked; it isn’t you, however.

Unfortunately, this board’s administrators seem to be deleting the entire thread when they have to kill a few posts. I don’t know whether by choice or technical difficulty. This has lost a few of my serious posts and I’m not especially happy about it either.
I have sent them a few messages requesting that the system be changed and only the hurtful posts be removed; no reply yet but they have a lot to do. I would suggest that others here make the same request so they know it is the general wish.

One time I used the search option and found that a few of the posts which did not show on the board still did show up on the search; will try it again and see if they are still there (try searching for the Davis discussion — the lady is seriously misquoting what is actually an interesting article.)

Good luck, and stay cool.

Try “Davis” and you will come up with the whole discussion, including my point-by-point rebuttal of some very serious misquotation.

Using a blacklight, never heard that one before. I wonder what the theory behind that was?

Just for the record, one of the common characteristics of Asperger’s is hyperlexia. They may not catch on to the subtle abstract meaning of literature, but they can almost always read, and usually have little trouble with it until reading class morphs into English .

Did you get a proper dx for your child?

Thank you for clearing this up Victoria. It is getting more and more annoying these days.

My now 11 year old nephew was diagnosed on the autism spectrum when he was 3 because he did not speak. He was very bright and loving but somewhat fearful of alot of things.

My sister did what you probably did and stuck that eval in the garbage where it belonged and then brought him to a speech therapist. This boy is now a very popular, kind, atheletic, straight A (scored 99% in math on the state tests) student. My sister is frequently approached by other parents to have them say, “You are lucky, your kid has it all.”

What would have happened if she listened to schools advice. You have to wonder.

I have to agree that in some private sectors autism is being overdiagnosed. There is a child I teach who carries a private autism diagnosis that we have disagreed (not formally) with for years. A few months back this very child constructed a detailed lie to create the appearance that he/she had behaved in a very socially acceptable manner (when the behavior had not been in accordance with social mores) in a specific situation. Then, when I suggested I would be speaking to the child’s father, the child in question experienced a sudden gust of memory and corrected the story, altering it significantly, to more closely match the truth.

Now, firstly the behavior in question was not socially repugnant, merely selfish. Next, I have not found that autistic youngsters can create untruths on the spot in this fashion, then have the wherewithall to quickly shift and change the story when it is apparent the adult might check the story. This represents several nonautistic behaviors: the ability to discern appropriate from inappropriate behavior, a concern for the opinion another might hold of him/herself and the talent to act upon this, and the ability to think and process several pieces of information rapidly and to change the story. These behaviors singularly might occur in autism: indeed an AS child might become despondent over social nonacceptance, an AS child may know some social norms; but these three behaviors in the same instance seem to me to display traits that are not symptomatic of core symptoms of autism.

That is only one example of many that cause me to seriously question this private diagnosis that we have cordially accepted and that the parents are dearly attached to.

Do I think something is wrong with this youngster? Absolutely yes and while I am not a psychologist, I might venture something more along the line of OCD or even some pieces of sociopathic behavior. There are many more fascinating, inappropriate, but seeminly very deliberate and calculated behaviors this child displays that do demonstrate social understandings and a flagrant violation of these understandings for some personally motivated reason.

Now, finally, I am very concerned at this very probable misdiagnosis. This child may very need mental health services. The autism label has become a sort of “flavor of the month.” Parents seem to like it. It excuses problem behaviors with less stigma than mental health labels. Bi-polar, for example is a mental illness. Autism is a disability that appears to occur with greater frequency in middle and upper class families. Very acceptable to have an AS child, not so to have an OCD or bi-polar child.

You might ask why we don’t challenge this diagnosis? Well, I provide appropriate services educationally (scarcely needed) regardless of label. Parent has a strong attachment to this label and a strongly vested interest in the label. Child was taken twice to same private practitioner who is prominent in the area, at own expense, who twice diagnosed child autistic. Parent likes to use disability to get things. So, to challenge this successfully without undermining our relationship and perhaps harming the child, we need to proceed slowly and cautiously. Perhaps in a couple of years we can broach the subject of the diagnosis.

why is it assumed that with an Autistic diagnosis that the kid can not need mental health services or be dually diagnosed with a mental health diagnosis? Actually I know of quite a few that do.

but I think that overall this will be more of a localized problem than a widespread, systemic abuse.

I will remind the readers here that the CA Studies conducted by M.I.N.D. only tally professionally diagnosed and confirmed children, not any who walk off the street, and in fact clearly mentions in all three publications (original study in ‘99 and the follow-ups in ‘02 and ‘03) that HFA, Asperger’s, PDD-NOS, etc. are all excluded from the numbers. Only DSM-IV 299.00 autism are counted.

If you read thru the PDF file listed above, and look at Figure #4 an interesting phenom is highlighted. Even in CA, which arguably enjoys one of the best access to diagnostic services of any state, children continue to receive primary diagnosis of 299.00 autism as late as age 10 (recall that brain plasticity greatly reduces after age 8, and that all clinical trials of interventions show the greatest gains and fastest progress are achieved when working with autistic kids younger than 6). There is another very interesting point about Figure #4 that ties in with a different aspect of autism; any who can guess correctly will win a free subscription to the Shaffer Report ;)

Individual school systems may or may not be padded with false diagnosies, but overall the majority of States are still under-reporting their autism based upon the prevalence rates determined by the CDC, UC-Davis and the Rhode Island Center. We are still catching up in the reporting, which is why so many States have had growth rates far in excess of the rate M.I.N.D found in CA (based upon the stats compiled by the US DOE, OSERS).

Both the Rhode Island Study and the Atlanta Study found that a number of autistic students (18% of all students identified in 5 counties surrounding Atlanta) were never identified at all until the survey team began their work. In the Marshall Study the preliminary findings were based solely on school records, and found that 4 of the 6 counties surveyed grossly under-reported their autistic students. I had occasion to speak with the director of the ATC and she said that this was only phase one, that the harder job of observation and ferreting out those students not in the school system would increase the total numbers, althugh she would not hazard a guess how high they might go.

I understand that there will be misdiagnosies working in both directions, which is why I always advocate that only professional, confirmed diagnosies be used when there is a question of doubt. It is in all parties best interests to have all children identified correctly, or elseneeds may be left unmet although FAPE has appeared to be satisfied on paper.

I have a child who falls on the spectrum who has received services since 22 months of age. He has received a ton of intervention and can sometimes come of as “normal”. He can tell a simple lie, for example: I did my homework when he didn’t-but has never been able to tell a complicated lie. This ability to tell even a simple lie is very new, he is 11. For the most part he is very truthful if you are fat he will tell you so ect. Just because he falls on the spectrum does not mean he can not relate to others just that it is more difficult. For example this school year my son had a friend who was also on the spectrum, this child gets picked on at the playground constantly, my son did not like this. He tried talking with the kids doing the bullying, he tried removing his friend from the situation but it still occured. The school social worker was floored with his next response: He asked to the playground manager to talk to “Mr. Rob” he told her it was important. When “Mr. Rob” asked him what the problem was he relayed what was going on with his friend, then commented: “I tried everything socially acceptable and nothing worked, what do you suggest?” As normal as this sounds, he used no facial expression, used monotone voice, and did not look at Mr. Rob. The response of going to someone for help was a learned response that took LOTS of teaching, proir to this he would of just beat all the kids in question up. This was the 1st time he ever used this. My whole point is some behaviors can be learned, if you look closely at the behavior it is not quite right.

Socks, you are a pediatric nurse. Have you worked with autistic youngsters? The point I was making is that this child does not manifest more than one of the core deficits of autism. There is overlap between autism and other disabilities, this is one of the things that makes diagnoses of high functioning children challenging to begin with. Also, this child engages in cognitive activity that would preclude autism.

Autistic children manifest language delays (this child does), they typically have a restricted range of interests with quirky obsessions (trains, freeway exits, etc.). This child has normal, age appropriate interests with no obessions. Social skills deficits are present in autism and are a core deficit. This child scores well on assessments of social skills understanding, however behavior does not always conform to social norms, though child evidences understanding of where behavior in nonconforming.

Autistic youngsters are typically pretty literal and concrete, black and white if you will. Others I have worked with probably could not construct an elaborately fictionalized story of their actions if their life depended upon it. Then to further recognize that the adult in with whom he or she is speaking has caught them in the lie, promptly revert to the truthful story, pretenting that he or she had, temporarily forgotten in a “senior moment” (my phrase)….this is quite a cognitive feat that requires a number of competencies that range from social awareness to flexible thinking skills. Not hallmarks of autistic youngsters.

Might an autistic child lie to a simple “yes or no” question, perhaps if they had learned through experience that a specific concrete behavior, if admitted to, might have an undesirable consequence? Probably this could happen.

Indeed, autistic youngsters may well benefit from mental health services in many situations. However, my somewhat limited experiences would suggest that a few parents tend to view autism as an educational issue and the domain of the school and the educational system. This can, but does not have to, interfere with being open to and accepting alternative approaches (the parent in this case has attributed ALL behaviors that are not strictly within the norm to autism, regardless of other circumstances that may or may not be motivating the behavior in a specific situation). It is my view, based on working with this family and situation that:

1. The child is not autistic, but has language delays and high anxiety (which can also be prevalent in autism). The anxiety appears to cause variable educational performance and is, in my unqualified opinion, probably the reason why the child’s IQ scores have flip-flopped and been all over the map across three different administrations of the WISC. Meaning, 10 in block design one year and a 5 the next, then back to a 9. 5 in vocabulary the first year, 10 the second, then back to a 9 or 10. And so on. Ditto for reading comprehension skills. 80-100% at grade level most of the time, with periodic dips to failing scores on days where child is anxious and upset and rushes.

2. The parent in this case has really grabbed this diagnosis and appears to use it to explain anything and everything, sometimes to the point of being blinded to what might also be happening.

3. The professional who made this diagnosis made it on very limited and partial symptoms and may have been wrong based on day to day performance.

4. This does not singularly explain the increase in autism, but this does occur with privately paid for assessments and is accounting for at least some of the increase and is prevalent in white collar communities where parents can afford to pay for private evals and where parents communicate to one another the names and phone numbers of professionals who will do this evaluation and who tend to find autism with a greater frequency than perhaps other evaluators; private and public.

Finally, nothing is all or none. This is a circumstance I am very familiar with and I would pretty much stake my professional opinion on this diagnosis being wrong. I think after several years of working with this child, I know him/her better than the professional who spent part of a day with the child. The parent knows the child the best, but sometimes (excuse if I offend, but I also speak from personal experience being a parent, too) parents are in a position where objectivity is more difficult, where they may not have access to experiencing the full-range of what constitutes typical behavior for an age group, and a parent who loves their child and wonders what is wrong is really reaching for a diagnosis, an explanation.

And then, to think, we have the opposite. The very autistic looking child whose parents insist that nothing whatsoever is wrong! Yup, I have that, too, on my caseload. Very interesting world.

No, I’m not down on parents, most are “right on,” but parenting is hard work and it is impossible not to be emotionally involved with the children you love and care for. Our emotions can make seeing some things harder and a small few parents really struggle to one extreme or the other.

I agree and an autistic youngster, with training, may learn behaviors but have some difficulties making the moment to moment judgements necessary to really applying the learned behavior competently.

The student of whom I speak speaks with appropriate and normal prosody and facial expressions. He/she makes excellent eye contact and has always done so. He/she has very good attention to task, sits appropriately in class and has good organizational skills.

Yes, there is some overlap with autism: language deficits, anxiety and variable social performance (but is this due to not understanding or his choosing, we think the latter).

These are tough calls, I know. I just don’t see enough in this child to really argue that autism is the cause of the few, very few, difficulties he/she has.

I am concerned, however, that there is at least as much or more that is symptomatic of OCD and that without the proper treatment, we may have some emotional issues deteriorating. The parent has recently sought private counseling, via health insurance, over a family issue and I applaud this, but encourage him to keep this up for the child’s benefit.

Thanks for sharing

I think I have met this kid and his family before. Very invested in a diagnosis, in denial over what is really happening. Kid uses it to manipulate. Yes, a classic.

I would be more concerned than you are over the wrong diagnosis. There is the problem you have noted, of deteriorating behaviour and no appropriate treatment. Then there is the problem that nobody, not even Anitya, is irreplaceable. What if you have an accident or become ill and are no longer in that class to give appropriate treatment? And of course the child will move on to another school, still with this diagnosis. After it has stayed on paper for years, it will become a self-fulfilling prophecy and the kid will be even further from appropriate treatment. I don’t know how you can push the family to change, but I would hope you’re working on it. Also, hope you have some of your doubts tactfully worded on file.

Hmmm… language disorder, social issues, OCD but not autism? Sounds to me the parent’s have enough challenges to deal with, without dealing with unsupportive school employees questioning the professional DX of the child. Every parent I know that has a high funtioning autistic child and has made sure their child has had every opportunity to succeed has run into unsupportive teachers and administrators who question the child’s DX after the child makes hard earned progress. Those of us who have been lucky enough to have the resources to offer our children and children with the ability to benifit from those resources hear it all the time. “Oh, he seems perfectly normal to me.” It invalidates the experience of the parents, all the challenges they have met, all the research they have done, all of the networking, the therapies sought out, tantrums lived through, sleepless nights… and then the joy of attending IEP meetings with people who think they know the child better than the parents but in reality… just don’t get it.

A higher incident of upper middle class parents tend to get more vaccinations at more well baby visits too. Possibly this might explain some of your theory regarding more upper middle class families having more autistic spectrum kids?

Anitya,

I am a pediatric nurse,working currently in a center full of developmentally delayed infants ,toddlers,preschoolers. I have worked in group homes with young adults. Have a worked with autistic youngsters? Absolutely. Interestingly enough,most youngsters I know,wind up still trying to prove they HAVE autism. Mostly because someone have decided they don’t fit the bill. Not to say,your “youngster ” does or doesn’t. I suppose that would be left up to the experts. I do not think people pay enough attention to dual diagnosed youngsters,just my humble,inexperience opinion.

Have you also heard of the theory that more upper middle class kids are being diagnosed ,due to the incidence of them being much more relable at getting the well baby check ups and immunizations? Just another theory,there is many.

I think that what you are describing was important at one time. When autism was first described by Kanner, vaccination was in it’s infancy and at that time only the UMC and rich could afford to do so. This may be the basis for Bettleheim’s failed theorm (assuming that vaccination are indeed the triggering event - the jury is still out on that).

What I am looking at in Figure 4 is the age of intake into the CA Reginal System…

why is there a delay?

I have encountered that theory, though our medical establishment denies it. Dad has been a fountain of information on this disorder and there certainly may be “metabolic” sorts of things that occur in youngsters with autism.

Rose, I shouldn’t dignify your accusations with a response.

I spend a disproportionate amount of my time with this child, esp. relative to the child’s academic needs. The child earns B’s and C’s and he/she has totally average intelligence in verbal and performance measures (higher on the third and most recent administration about a year ago, up from two prior administrations that were in the 80’s). Academic scores remain totally in the average range.

This child likes me and my classroom. He/she feels safe with me and I spend time discussing issues and concerns of his/hers with the child. The parents are happy with me.

I have never said to them, and never plan to, “there is nothing wrong with your child.” I do not see autism per se, however I do see areas I can help with.

My concern has been that the child probably should be receiving mental health services for certain issues that really have not effected education. Clearly with good solid average scores and grades….. my program is not a counseling program.

The public school can do many things, but we are charged with educating youngsters, teaching challenging state standards in content and skill areas. When a child functions and makes progress, I cannot argue that the school is the agency that must provide mental health services. We are an educational institution. Sometimes, when the mental health of a student does impact performance (I had one earlier in the year we referred for this reason), then we refer to the county. Our county has several trained psychologists and counselors that will work with certain students and families.

My student’s parents are lovely people. They care. They both work and have two different medical insurance programs that they can access to provide for their children. They have no quarrel with this.

My student was taken to counseling for an entirely different issue recently. I have applauded the move and have gently encouraged the family to continue beyond the current “crisis” (which has not effected school performance). I hope they will keep this child in counseling.

My role is not to “beat the family up.” That does not help the child. My concern is getting the child what he/she needs. Frankly I don’t care about a label, unless it is possibly blinding parents or teachers to something else that may be going on and should be addressed. That is what I thought was happening here. The mother is sharing thoughts with me now that suggest that she is beginning to raise the bar on certain issues at home and not excuse as much due to the “disability.” She has initiated this discussion.

I think you were way off the mark in making your call, assuming I am the bad teacher who points the finger at these alleged “bad parents” by denying their expensive private evaluation and insisting all is well.

Board now in full-moderation mode.

Thanks Dad. Does this mean when posted in the evenings the post will not appear until the following day?

You will have to ask Kathleen…

Anitya, You are probably the kind of teacher I dream about for my children. Sorry I offended you by ranting about the negative experiences my friends and I have had to deal with getting our high functioning autistic children educated. I know children who are years ahead in academics that are still in diapers, others that have behavior that makes it impossible to participate in a regular class, others looking at institutionalization. I’m talking about very intelligent children who made amazing progress. All of us have had the school system question our children’s autism DX at some point. All of us have had our children’s right to services questioned. Alex’s last special ed teacher resented his being in her class because his needs were different than her other children. She could easily have tried to argue that a child with his academic skills didn’t need special ed services. She does not understand the challenges he will face in school socially and probably with academics as well once the academics become less concrete in nature. school is where our children need to learn to be productive members of society. That requires more than getting good grades. There I go ranting again. I’m sure that you are doing your best for the chilren in your class.

oh? And Who is Kathleen? Is this the moderator?

I did not have my son have the sleeping EEG the doctor recommended. I did not want an autism diagnosis and denial aside nothing that was done to us at the doctor visit gave me any confidence in the diagnosis or the diagnostician. Yes, the doctor said, “You can get all kinds of programs.” Scary!

Yes, there is much more than academics. I cannot speak to or for this teacher. I will suggest that often we are stretched pretty far and a child who presents very different needs may be difficult to get to in terms of time, so I do understand a teacher who may feel that a particular child is not a good fit and has needs that are not met in the class context very well.

HOwever, I will continue to take the position that our primary function to society is in teaching academic skills. I have already agreed that other skills contribute to a satisfying and productive life and many of these other skills are learned at the patents’ knees and in our daily lives outside of school, which constitutes many more hours of a child’s life than school does. So, when a child in our classroom has difficulties of other kinds that do interfere, then we teachers take the time to handle them. A fair bit of time is spent in regular and special education dealing with behaviors, getting along, etc. But, as long as we are primarily tasked with teaching academics and we are tested and rated on this, then this is the job our society wants us to do.

So, for example the student I ranted about, does some things that are not great socially. This child is not particularly well liked, and teachers and parents are attempting to help this child understand these issues. But since this child does not disrupt and receives average or slightly better grades, then we are not going to focus heavily on these issues. The parent does and this child is now in counseling, as I mentioned. I believe the social-emotional domain is primarily the responsibility of the parents and should be addressed at school when it presents problems that relate to learning.

While my heart goes out to a marginally acceptable child who has only a few friends and I do understand how hard life can be, I cannot fix all the parts of every child to make them in my or their parents’ image. I am far too busy trying to just teach them reading, writing and math so they will have the academic opportunities they hope for. So, addressing the interpersonal issues will almost always take a back seat.

Frankly, we don’t have enough teaching hours in the day or enough staff to take upon ourselves the roles of teacher and counselor and do both well.

Anitya, Thanks for your perspective. I will keep it mind at our IEP meeting today. We really want to get an aid for Alex. Not only to help him but to do things for the teacher that will free her up to do more for all the children.

You are welcome and thank you for your kind response. When I saw that you had responded to me, I thought, “Gee, I’ve really hammered this one.” So, again, thanks for sharing your views and experiences. Happy Holiday weekend.