“He’s Just a Late Talker—He’ll Grow Out of It”
July 18, 2008 by Kristina Chew, PhD
Filed under Health
A July 18th editorial by conservative thinker Thomas Sowell about the false diagnosis of autism—–it’s entitled “Rush to diagnose autism causes more harm than good“—-responds to some recently announced techniques to diagnose autism earlier in children. Sowell criticizes what he sees as the over-diagnosis of autism in young children who are really late talkers (keeping in mind that Sowell is the author of a author of a book about book about late-talking children) and decries the whole notion of the autism spectrum:
Those who diagnose children by running down a checklist of “symptoms” can find many apparently “autistic” children or children on “the autism spectrum.”
Parents need to be spared the emotional trauma of false diagnoses and children need to be spared stressful treatments that follow false diagnoses.
If a child is talking late—-as were the young son of a friend and the granddaughter of a work colleague—-I don’t think it hurts to seek out Early Intervention and have a child evaluated and even start some services (most likely speech therapy which, for a very young child, incorporates a lot of play). I am not sure what Sowell’s experience with any such services were; in his book, he does write about now-adult son as being a late talker. Far from being “stressful,” starting therapy with a child who may not yet be talking or who has yet to attain certain developmental milestones (keeping in mind that they are milestones) can be something of a relief. When my friend’s toddler son was not talking, he started to get some speech services and (she’s an autism therapist herself) she started to focus more on his language and communication too, and things are good and stress is not up, but down.
If we can get the message out that an autism diagnosis (however false or true) is not a death sentence and that there’s lots you can do, lots of hope, perhaps worried parents won’t cringe so much at that “a-word.” In some ways—with their belittling tone about Early Intervention and parents’ real, not hysterical, worries—is starting to sound reminiscent other language recently misapplied to autistic children.
I do have to admit, when Charlie was 18 months old, and neither used nor understood any language, and was clearly very different from the other children in daycare, there was no phrase I cringed at so much as “oh, he’s just a late talker; boys are like that—he’ll grow out of it.”
CS wrote “I see things you folks don’t see.”
I was the VP of IS for a mortgage bank. It was owned/operated by a major “Democrat” who greased all the right wheels in California, just as Fannie and Freddie were operated primarily by crooked Democrats and a few token Republican crooks. Crooks are crooks are crooks.
You should never assume people here don’t have a variety of experiences and expertise. I left the tech field to return to teaching and autism research. Others might still be in the corporate world. Many of us are academics. Others are simply great parents.
Instead of attacking political views, which is not the point here, offer ideas to better educate the public about autism.
Political debates here only serve to further divide a community that has a common interest: helping individuals with autism achieve the most they can.
I don’t care if a social conservative, a social liberal, or the Jolly Green Giant has the best new idea. I just want to hear all the ideas that might help.
“Chuck, what state would that be and have the democrats in that state house/senate tried to pass legislation that would offer a choice?”
I don’t know what they have tried to pass, but nothing has passed in the past 7 years we have be on the state waiting list for services because the budgets are predominantly for institutional expenses. The potential opening for services should be in 2010.
“We do want government to provide safety nets.”
Liberal governments, like Louisiana, always tell you exactly what they will give you and always demonstrate exactly what they are capable of giving to you.
@CS,
Could it possibly be that you are upset with Sowell because of his political views, and not so much because of what is written in his book?
Although I haven’t read the book, I did follow Kristina’s link and read the several pages excerpted there.
I’m with VAB. Sowell recognized he had a “different” kid, he took the advice of a friend that said to just love the heck out of him and take him everywhere, and he got him speech therapy and successfully raised a kid who was perhaps on the spectrum.
Sowell also stated that he wasn’t trying to say that autism didn’t exist, only that he felt that it was overdiagnosed. The idea that one possible reason for the rise in autism diagnosis is the availability of support (mainly access to speech and OT programs) was not developed by Sowell, only echoed by him. There are those of a neutral political bent who have said the same.
Although I don’t agree with everything Sowell said, I find it far less offensive than those who demonize autistics in one breath, and offer miracle cures in the next.
Joe
I find myself wondering just how Sowell would have autism diagnosed, if not via a “checklist of symptoms.” Aren’t the DSM IV criteria, at their core, basically a “checklist of symptoms”? And at this point, that’s what autism IS, by definition.
Right?
So if not the DSM, then what?
I’d been hoping tristan was a late talker, but then, with his regression, I should have known better – I’d a friend with a kid that didn’t talk until he was three, I was at the time hoping that’d be the case for Tristan (oddly enough that friend’s older, not late talker son ended up diagnosed with aspergers, but the late talker doesn’t have any diagnoses). However, when autism was presented, while i did look at the requirements, and think well, a hell of a lot of kids could be diagnosed with those (I had originally figured Tristan was severely adhd, having experience with his adhd dad), I was thrilled he’d get services, and preschool.
There seems to be a gut reaction from some. Sowell is not an autism expert, however he is stating that some diagnosed with autism would have received a different diagnosis or no diagnosis in the past. This is a broadly supported position. Any review of the “epidemic” question will demonstrate that.
I’ve seen posts that regional centers which in California are responsible for the delivery of services to autistics outside the classroom are overstating the problem to gain more money, and that from someone who blames society’s problems on “rich white people” suggesting a left-of-center view.
Both the left and the right want to raise awareness of the problems they feel must be addressed. If you disagree with the problem, you can dismiss their concerns as fear mongering.
Two cases in point : Terrorism and global warming.
No sane person is for either. It is a shame though that when a discussion turns to what needs to be addressed more the sides often do not think the people are wrong but evil.
This is also true of much of the neurodiversity debate.
I will say there are more on the left which think the right evil than on the right. Also it seems there are more believers in neurodiversity that believe not supporting it is evil, than those who don’t cotton to neurodiversity’s ideas. These are generalities not absolutes. That is there are plenty of neurodiversity supporters who simply believe its opponents are wrong, not evil.
I was a late talker, not talking until I was 4 years old. No speech therapy was given me; my parents rightly figured I would talk when I was ready, which I did. Only a few years ago did I find out that I indeed did have autism. I feel I could have easily met the criteria for autism even back then, but it was for the best that I didn’t get diagnosed. I get the impression that Mr. Sowell just doesn’t want to spend money on supporting those with autism. I have run into people with the seemingly generous attitude that we are all equal really just looking for a way to not have to make any accommodations.
On Sowell: to me, this is very much in the selection by production bias; if it produces the right result, it is “Einstein Syndrome”, and if it’s not it’s autism. Never mind the condition itself and the tenants of both that make them the same in nature. It’s double-speak to say that if a quality makes an individual get a result we want, it is one thing, but if that same quality makes an unsatisfactory result, it is another entirely.
Now, do I think that autism isn’t misdiagnosed as certain other conditions? Sure, it can be. But if we’re going to be talking about a personal condition, we might as well be frank and talk about it in its entirety, which includes the broader diagnosis of the DSM-IV. It’s not helpful to split the condition when suddenly it seems to converge on behaviors that might be seen as ok or even wanted.
As to the politics; I think Autism Mom is genuinely correct in saying that the bedrock of conservatism does rest on particular notions of personal responsibility (and, along with that, family), and it is in regard to the discussion of the casual nature of criminal behavior. They happen to be notions I don’t personally agree with, but they are there. Now, does that mean that progressives tend to believe in not holding people responsible for crimes? No, but it is a program which is based on preventing the circumstances that would drive people to criminal behavior.
As to bias against individuals with disabilities, just having done work with legislators and the like, some notions of autism can sometimes seem different (not as an absolute, mind you). On both sides, I hear “bad parenting/bad behavior” statements, but I hear it more often if I was talking to a conservative. On both sides, I hear “unfortunate tragedy” statements, but I am more likely to hear it talking to a liberal. Note I find neither helpful in actual describing autism.
Now, for me, I actually do find that, in terms of advocacy groups, progressive ones tend to be less biased from how I see the issue. That makes sense; groups that identify with “civil liberties” are dominantly on the left. But, even here, this is a small enough part of the “liberal establishment”, and even here it is only more likely (not certain at all) that those individuals will accept disability advocacy as civil liberties.
A lot of absolute/presumptuous statements to be careful of, though. I hardly am saying one party individual is going to act in a way on such an issue. And it is always a very tough claim to say “I see what you don’t” without it being a detail-oriented matter.
Cliff
In our case, when people said of Charlie “oh, he’s just a late talker,” it was painful to hear—-the message was that we were being “hysterical” in thinking that Charlie might actually have “something severe.” As VAB wrote, if Sowell focused on the message of being ok with a child developing differently—–a simple but important message that does not get out there enough—-that would be something to stand behind.
Some reaction from a speech disorder support group several years ago:
http://www.apraxia-kids.org/site/c.chKMI0PIIsE/b.980831/apps/s/content.asp?ct=464705
Also, why would anyone take the advice of an economics professor over that of a trained speech and language pathologist?
I agree with Club166 and farmwifetwo. The problem I have with Sowell’s message is the insistence on separating bright, Einstein-esque “late-talkers” with autistics. Because, we all know that autistics aren’t bright and have no skills. He also does not appreciate the benefits of a diagnosis in terms of getting services and just plain old understanding, but that’s just typical conservative stuff (IMO). He still does seem to have a better appreciation of developmental differences than a lot of the people who promote panic and hysteria over autism and the faux epidemic.
His argument is problematic, but I don’t think he’s entirely wrong in saying that super-early diagnosis is not always warranted or necessary. I’m a bit skeptical about diagnosing ASD at six months. How many false positives and false negatives would such a test produce? What kinds of help would be available to such a young infant possibly on the spectrum?
Unfortunately, any good points he may have get kind of washed away amidst the “autism is scary and hopeless” rhetoric.
CS, it looks like you’re on the wrong blog. It’s tedious paging through your political propaganda on what’s *supposed to be* a post about late-talking and Thomas Sowell. Maybe if you hyperlink on over to Daily Kos, you’ll have more fun.
“I’m still waiting for the linkage though from you showing that liberals believe poverty/environment is a “get out of jail free card”.”
I provided that answer. If you can’t figure out who those people are, there is no hope for you in this discussion.
@Autism Mom: Personal responsibility and accountability are not “conservative” values to any greater extent than they are “liberal” values. Claims to that effect are rhetorically fallacious overreaching. As are claims about one side or the other being the sole promoter of “family values” or “faith”.
MY post is in response to “educating about fear of autism”
Actually the real message that needs to be brought out is pushing for accurately done examinations for children.
The real problem is in many cases with late talkers examinations are not being done accurately.
Late talking is not the hallmark of autism.
So many times in my own support group at latetalking.org the response I hear given by school systems ( and others ) to parents who want scientific process and integrity when their child is observed through testing -is the claim their demand for accuracy is about fear of autism.
Requiring a test to be done accurately is not about fear of any condition or diagnosis .
It is about medical accuracy, and scientific accuracy – nothing more, ….nothing less.
If I were having my eyes examined whether I needed glasses, and I wanted to know correctly if I needed glasses and if so the correct lenses for my eyes, I would not want to be told that ” I am afraid of near-sightedness ” and that is why I am demanding accuracy.
It is unbelievable how hoodwinked parents are and how they are manipulated away from properly done evaluations, exams , testing , and even seeking out medical help.
As a former member of the official Yahoo late talker group (Powell’s beliefs are the expressed foundation of the group philosophy), I can say with authority: it’s all bullsh*t. “Late talking” is PDD. The members of the group dodge doctors, administrators and even speech therapists. Their children present exactly like mine does, to a tee.
In regards to the conservative slant, I don’t know if anyone here has made the connection but Dr. Camarata (this guy: http://latetalkers.org/index.php ) provided the basis for Savage’s controversial remarks. Click on the July 21 segment: ( http://www.talkradionetwork.com/premiumstream;jsessionid=FB4CB98E17AD2CBD3641DF3170AEE312?dispid=304&headerDest=L3BnL2pzcC9tZWRpYS9mbGFzaHdlbGNvbWUuanNwP3BpZD0zMjY2JnBsYXlsaXN0PXRydWUmY2hhcnR0eXBlPWNoYXJ0JmNoYXJ0SUQ9MzA0JnBsYXlsaXN0U2l6ZT05MA==)
The criteria for “late talkers” according to the latetalkers.org website are:
“1. Outstanding and precocious analytical and/or musical abilities
2.Outstanding memories
3.Strong wills
4. Highly selective interests,leading to unusual achievements in some areas and disinterest and ineptness in others
5.Delayed Toilet Training
6.Precocious ability to read and/or use numbers and/or use computers
7. Close relatives in occupations requiring outstanding analytical and /or musical abilities
8.Unusual concentration and absorption in what they are doing.”
It describes my son to a tee, and guess what- he’s been diagnosed with PDD-NOS or “mild” autism. He started to talk just after his third birthday, and is now communicating pretty well with his caregivers, but it’s also illustrated how appropriate his diagnosis is… His language tends to be repetitive, he stims on the alphabet (singing it, or just saying it sometimes) and he counts everything… Yet, we’ve been told over and over again (mostly by well-meaning relatives) that they’re sure nothing is wrong with him, because he’s obviously so bright, and have we heard of Einstein syndrome? Late talking might not the only criteria for autism, but it’s an important one, and when you have a child that isn’t interacting with peers (even if they interact with adults), and is showing an obsessive interest in number or letters (or something else), then chances are, that child’s on the spectrum, and telling yourself that they’re not talking “because they’re so bright” means that that child isn’t getting the services that they need. (As I live in Ontario, it also means that you’re wasting valuable time getting on the waiting list for services, which is estimated to be about two years in my area!)
@ Laura from Jul 23, 2008 at 5:28 pm above:
Did you even *read* the Sowell editorial this post was about? It specifically refers to Stephen Camarata and his work with children (both on and off the spectrum) at Vanderbilt. Ergo your BIG SCOOP “I don’t know if anyone here has made the connection but Dr. Camarata (this guy: http://latetalkers.org/index.php ) provided the basis for Savage’s controversial remarks.” is a little bit like the “DUH!” heard ’round the world.
As for the rest of your post, I was left confused. “As a former member of the official Yahoo late talker group (Powell’s beliefs are the expressed foundation of the group philosophy), I can say with authority: it’s all bullsh*t. “Late talking” is PDD. The members of the group dodge doctors, administrators and even speech therapists. Their children present exactly like mine does, to a tee.”
Who the hell is Powell? How did you develop your remarkable ability to differentially diagnose a few thousand children you’ve never met? And are you really so sure you’d like a crack at mine? Because she’s seen a both a developmental pediatrician and a pediatric neurologist and neither of them think she’s PDD-NOS, so I’d love to know what makes YOU so sure she must be – merely because I read the Yahoo late-talkers list. PLEASE SHARE.
By the way, how exactly am I dodging doctors by taking her to the pediatric neuro and the developmental ped in search of diagnoses? And am I doing the same thing by taking her to an S.T. on a weekly basis? In addition to the O.T. and the services she gets in Pre-K? All along I thought she had a language delay but it seems you think you know more, and that “Late talking = PDD.”
Or are you, by some chance, talking out of an orifice other than your mouth?
There are some confused people about the chicken or the egg regarding Savage.
Savage never knew Camarata originally , Camarata may have been aware that Savage exists as a talk show person, and Savage never knew Sowell before Savage’s remarks.
Savage was up to his usual sensationalism which is what he gets paid to do , talking about over diagnosis but in a hyperbole manner. His statistics were not correct.
I personally do not agree the statistic of overdiagnosis is 99 percent because of brat kids or parents trying to get free funding.
If someone listens carefully, Camarata did not agree with Savage about these statistics.
He was quite clear about sloppy testing and bad scientific process as a cause.Camarata said that clearly on the show but in different wording.
Its very complicated , and no one really can give one reason for it.
Sowell’s books and articles are not to be taken as peer reviewed scientific studies .He is correct there is a problem, but clearly more studies needed to happen to get at the bottom of perfectly normal children who happen to talk late, end up socially fine like everyone once language comes in.
Savage and Sowell both politicize it, which over time takes people away from focusing on the rea problems.
Its the sloppy linear assumptions that is causing over diagnosis.
Yes, I’ve tried to see Sowell’s views as, in many ways, from personal experience, though that perspective does not come through so much in his writing.
Someone incorrectly stated in some post above that the criteria for late talkers was Sowell points in his book.
As far as I know the website lists Sowell’s orignial observations and traits for parents who are exploring whether their child is strictly a bright late talking child in which the late talking normalizes without speech intervention. The website goes much further into this – once again, bloggers love taking things out of context.
These children are being studied over time.
There are a lot of self professing individuals who are putting blogs online diagnosing other parent’s children, and misrepresenting other people’s groups. As well lurking on private lists and copying private material on the internet.
As far I as know, the intent of the latetalking.org site is to get parents to qualified professionals who are properly trained in CARS, ADOS, Peabody, Leiter intelligence test, where appropriate.
Also qualified professionals need prior experience with children who are late bloomers in speech , experience in aphasia, phonological issues, mixed receptive expressive language disoders, Hearing issues, expressive language disorder, PDD , PDD-NOS.
These are very experienced clinicians who acknowledge much research is and still needs to be done.
I write this as a warning to parents who are reading blogs written by amatuers claiming they are able to write their own medical manuals.
Stick with the professionals.-Susan
I was somewhat puzzled by some of the writing above and may have mixed up a few authors.
But to clear up any confusion, I thought I would go to the latetalking.org website and directly copy what is on the front webpage so there is no misinformation put on the autismvox website.
Because the process on the most part ( in the group from latetalking.org ) has been for parents to seek out professional help for their child when necessary, and work on speech enrichment a communication at home, not a lot of time has been put into dealing with individuals who like to spend time misrepresenting others.
Because so much of this type of behavior has happened in recent months , I know the website will be revamped to address misinformation put out there..
For the record, -Sowell is not a clinician .If anyone reads the book – it is not a peer reviewed medical journal. It is a book asking questions in a journalistic fashion . I personally read these approaches with caution just as recent blogs that are misrepresenting people.
Einstein Syndrome is by no means a “syndrome” in the DSM IV, and many parents who are exploring bright late talkers that later normalize with speech, understand this.
Although Sowell involved himself with claiming political agendas as well as Savage, politics are not part of the mission or goal of the parents who are working to have their child fairly and correctly medically and behaviorally evaluated.
Below – the intro on this website clearly does not cover all the questions.
____________________________________
For parents of latetalking children there are few support groups , specifically designed ,concerning children who are latetalkers and have many of the characteristics written in Thomas Sowell’s book.
This site is to help Parents of late talkers , who feel that their child may have been incorrectly diagnosed with another disorder only because their child is a late bloomer in speech .
We all know the story told by relatives about a cousin who spoke late and turned out to be very bright.
Unfortunately , a trend has developed to panic parents , and to rush to bring on a misdiagnosis because the behaviors in latetalkers can mimick Autism or other issues .
If you are a parent and find yourself in this situation , or are exploring and working to understand your child as a late talker , please come and join us !
This group and site also works to help parents be aware of who might be available to evaluate their child correctly without false diagnosis to get free services. It is not the fault of parents who are pushed into this for free services , but this group explores ways to be able to seek constructive alternatives with a more scientifically correct approach instead of what is encouraged by the current bureaucracy of some early intervetion services.Dr Stephen Camarata is one of the researchers mentioned in Thomas Sowell’s books and is one of the most helpful guides in helping parents of late talkers.
Information : list of traits in bright late talking children discussed in Thomas Sowell’s book. I want to credit the quotes below to Thomas Sowell in his book , and that these similar Traits are found in Dr Camarata’s studies .
1. Outstanding and precocious analytical and/or musical abilities
2.Outstanding memories
3.Strong wills
4. Highly selective interests,leading to unusual achievements in some areas and disinterest and ineptness in others
5.Delayed Toilet Training
6.Precocious ability to read and/or use numbers and/or use computers
7. Close relatives in occupations requiring outstanding analytical and /or musical abilities
8.Unusual concentration and absorption in what they are doing.
In sincerity, I hate to say “listen to the show”, but the 7/21 archived broadcast is the one that Dr. Camarata is on if you want to hear him first hand. His segment is about 1/2-2/3 of the way through the program in case you want to do something else until he comes on.
It’s too bad that there isn’t a serious program where you could listen to a serious roundtable by people like Camarata, Minshew, someone from the MIND, etc. get together to discuss these matters to hear their observations first-hand and see what the areas of overlap and difference are as opposed to commentary and reaction on something like the M.S show.
If everyone was able to go to Vanderbilt to get that lengthy, exhaustive (and expensive?) eval, that might be a nice thing, but unfortunately that doesn’t seem possible.
Susan said “Einstein Syndrome is by no means a “syndrome” in the DSM IV, and many parents who are exploring bright late talkers that later normalize with speech, understand this.”
Well that is certainly true. Einstein could actually speak when he was just a bit over two years old (something my oldest could not do). I mentioned this in my essay along time ago (hey, it is still there! some of the links are dead, though I quit the listserv a few years ago):
http://www.apraxia-kids.org/site/c.chKMI0PIIsE/b.980831/apps/s/content.asp?ct=464411
About ten years ago Camarata had a website on the “Einstein Syndrome”, and late-talking stuff. I sent a question through it, and it was never answered. My son still does not quite have terribly great speech, and he struggles. He is still getting disability services, more recently for employment.
There are also lots of different speech and language disorders. To get a good overview read Patti Hamaguchi’s book “Childhood Speech, Language and Listening Disorders, What Every Parent Should Know”. She is a speech/language pathologist.
Which reiterates what I said before, and what I believe Susan is saying: Do not look for answers from an economist, go to a real SLP.
(Note: My younger son had many of the issues in that list. He refused to get potty trained, while my more disabled older son was right on schedule. My younger son did get language therapy between the ages of 3 and 5. That all of the treatment he ever had. He is NOT autistic, he is a very normal teenager — he thinks the Zits cartoonist has a camera in our house, and he did score a 1970 on the SAT in June. So not every child who is slow to talk is autistic, nor will they become super smart kids later — my older son never passed any standardized test).
It’s been a long time since I read Sowell’s Late-Talking Children and the book was not helpful for us, but my son had a lot more needs that were quite apparent. I noted particularly how Sowell referred to his own son who was a late talker and a certain insistence how that was all there was to it (I’m not saying more than that!).
The book was written some years ago and the landscape for Early Intervention is very different. This discussion makes me think it’s most important to emphasize, suspicion of autism in a young child can be positive and need not be scary—-but it is, if we make it so.
Hi Kristina ,
Yes, you are correct – one should not say more about another parent’s child because one can’t as a non-professional – I would not either.
This is one of the principles that are so important .
Only qualified professionals should , through appropriate process,…… diagnose.
From what I remember, Sowell did seek out professionals, and the main point of the book was getting a qualified professional, and getting speech therapy when needed, and getting appropriate medical examination and hearing tests.
Some of the outcomes of the children were not necessarily concluded. What was correctly pointed out was faulty processes in examination.
Important to note is lucking out and being correct as a professional but using poor process simply is not good enough and people should be made aware.
One of the biggest problems in the large community is that many people have a very weak scientific background.
I am not that much stronger , but having grown up with scientists in my family, I was taught to distinguish correctly between different processes.
For example, I have noticed many people have a hard time distinguishing the difference between finding a qualified professional, and choosing anyone on the block that postures authority , and why this is an important issue.
I have heard parents advised to use a qualified professionals with good capabilities, credentials and experience, while others immediately get hysterical and claim that person for qualified professionals is advising not to go to a professional- just because one is advising using discernment.
Now, in my background of being around scientists, I know and can distinguish between these two issues below:
1. seeing a qualified professional,
2. Seeing an unqualified professional.
Not only knowing the difference between these two items are important, but understanding why it is important and why this is suggested is important.
There is no hidden agenda .
Seeing a capable experienced professional and how to discern that, always will be, the right process.
There is a common claim by some that going to a good experienced professional has something to do with fear is at times used as a type of emotional blackmail. Instead of respecting a person’s objectiveness and discernment , one is trying to play games of belittling the person right choices in process.
The logical process in correctly identifying a flower, condition, disease, syndrome, plant, ethinic background, species, planet, has to do with doing things right – not fear.
Getting a child properly examined with objective observation is exactly what it is .
The book was helpful for me, but my child did not necessarily fit the classic points of that book.
I have a late-talking son and read Sowell’s book as well. I was quite comforted by it, actually, and didn’t find that he was against services, but that he thinks people should question any diagnosis they do not feel is correct. I also disagree w/ getting services not needed and that it doesn’t harm the child. My son was evaluated by Early Intervention and we were given a whole roster of issues – Sensory, ASD, low muscle-tone, etc. In 6 months he outgrew about 90% of the behaviors they cited for their evaluation (which took 45 minutes by the way). When they tried to give him “treatment” for the issues they decided he had, he would become incredibly upset and frustrated. It’s hard to describe what a nightmare this time period was for us, but I have spoken to many parents who experienced the same thing.
I feel that if a child doesn’t have an illness or disorder they should not be treated for one. If you also treat them for the wrong disorder you may not find the real root of the issue they do have. I also have been shocked by how many people in the system have advised me to let Early Intervention, and anyone else, label my child with anything to get free services – regardless of the fact that my child will then be labeled as something they are not. When you do let them label your child w/ something they may not have, and also agree to share that w/ the public schools, it can haunt you. My neighbor had a kindergarten teacher try to have her son, who was definitely behavioral but not on the spectrum of autism, removed based on the diagnosis of ASD he was given as pre-schooler. She didn’t want to deal w/ his behavioral problem and it was an easy way to get him out of her class. The reason he was diagnosed w/ ASD was because he was not talking at 3 but then he came up to speed by 4. They went through hell getting that diagnosis reversed and officially on record. The bottom line – If my son were Autistic I would be fine with that and do everything in my power to get him what he needs. But I will not acccept someone giving him that diagnosis just to get services or provide the doctor’s with some sort of label to explain why he talked late.
The basic truth is there are a bunch of evaluators out there declaring children autistic or ASD that have no business doing so. It’s the Wild, Wild West, with schools doing some of the diagnosing or “assessing” as they like to call it, and psychologists and developmental pediatricians doing some of it.
Too many of these evaluators haven’t had the proper training (all the tests require HOURS of training to give, and the tests are recalibrated on a regular basis.)
And what’s wrong with Early Intervention, you say? Like so many things, EI is all over the map in quality and level of services. Speech therapy for a late talker could be a great thing, but Applied Behavior Analysis could be a DISASTER for a child who isn’t autistic.
And the incredible danger in this is that families are going bankrupt running from unproven therapy to unproven therapy.
A Michigan family was on the news…they went bankrupt because they spent so much on therapy. Now their son is “cured” of autism— guess why? Because his LANGUAGE came in.
Leila wrote: “A lot of people have trouble accepting the autism label…”
The reason a lot of people may have trouble accepting the autism dx is because they know it is not the correct dx for their child.
My child was misdx’d at age 22 months. I knew it, his EI therapists knew it and I didn’t worry too much about it at first because to me it seemed evident the dx was incorrect.
When he transitioned to special education preschool and BEFORE the new therapists received his IEP, I did not tell them about his dx. (I did not know it would be written on the IEP, was told it would not follow him). Prior to their receiving it, his therapies were appropriate to his needs, I was told how well he was doing and everything went smoothly.
As soon as they received the IEP and read the dx, his therapies CHANGED! Why? Because now they were providing techniques and therapies to coincide with a dx, not with the child.
Here is a simple way to put it for those who have a child on the spectrum. You might have heard time and time again your child was just a late talker. That was very frustrating for you because you KNEW that was not correct and something else was going on.
It is just as frustrating for parents whose kids are late talkers or have expressive/receptive language disorder when they are told their kids are autistic. They KNOW that is not right. It is just as demeaning to those parents when no one believes them when they say it is not autism.
I don’t understand why some parents who have a child with autism INSIST that if a parent will not accept the autism dx it is because they are in denial. How are we any different? We are not!
Imagine if the school district INSISTED to you that your child did not have autism, but was instead severely mentally retarded, but don’t worry! We will give your child services.
Would that be okay? Would you believe that those services would be appropriate for you child? I think not!
It is not any different to those of us who KNOW our child is not on the spectrum. That does not mean we run from evaluators and the school district. My SD insisted my son was PDD-NOS. I had him privately evaluated 5 times! Each time I was told he was not on the spectrum.
I had him evaluated so many times because I was so afraid of my being wrong and not getting my child the services he might need, but he was DEFINITELY stressed from getting inappropriate services.
I finally once and for all had my son evaluated by Dr. Stanley Greenspan who said he was not on the spectrum. Only then could I finally relax and trust what I KNEW in my heart all the time.
However, before this eval, the school wanted to place my son in a special ed class. He NEEDED it they told me. After the eval, surprise, surprise, the SD said he no longer needed the special class.
Nothing to be fear in an autism diagnosis, or when there is late talking—–because there is a lot that can be done, and if getting a suggestion of a diagnosis leads to starting speech therapy and other educational therapies, this can be well.
@Jodi,
And one might especially wish for more consistency in regard to school districts who evaluate children, versus physicians and other medical professionals who have been trained to evaluate a child based on ADOS and the other tests suggested.
One wonders too about reports of “recovered” children: Perhaps their diagnosis was not accurate.
Well put, Jane!
Autism was extremely rare until relatively recently. Why? Was it just not diagnosed, no it was simply that people by and large had no room to get away from interaction with other people, their family was “in their face” all the time. The Russians have had great success with children who were severely autistic by physically grabbing children to get their attention. As with so many American drug based techniques that simply don’t work (but make all those PHD’s out there a lot of money) physical techniques do work but they are cheap and of course cheap means they can’t make money out of it so they are derided by “experts”. Dyslexia is another “modern” ailment that miraculously disappears when children are taught to read using phonic methods as anyone over the age of forty probably was, how many of us were/are dyslexic? Most of the “problems” we see in children these days are not real, they are imagined problems that someone makes money out of and that allow mothers, in the main, to validate themselves as wonderful supporters of their children at the expense of handicapping those children. When we see demons or disease around every corner it is usually time to look in the mirror for the source. Children by and large are fine if left to go at their own pace but socialisation requires places to socialise and separate bedrooms and “me time” are about de-socialisation so logically we either reverse these trends or we accept the result, unsociable, selfish adults. Tough love, a father’s love, is what is required and not the child abuse of projecting imagined illnesses on our children that they are all too ready to play up to. To be led astray is no excuse for going astray ……. unless you are a very young child so let’s put the blame where it should be put on the adults who should know themselves and their failings better before they presume to know their own children and their imagined failings.
Most of the “problems” we see in children these days are not real, they are imagined problems that someone makes money out of and that allow mothers, in the main, to validate themselves as wonderful supporters of their children at the expense of handicapping those children.
Ugh.
@John–yes, it is all mom’s fault. Once again, let’s blame the mother. My child is just pretending not to be able to speak. It’s fun for him to not communicate efficiently with the world around him. I am simply not trying hard enough, not to mention my cold and unloving nature. Maybe I can just shake it out of him. Physical techniques…why didn’t I think of that? It’s so simple…a little child abuse ought to solve the problem. Thanx for the wake up call. I am sure that tomorrow he will not be autistic. Grrrr…..
Just another refrigerator mother.
Interesting comment about the Russians.
Since there was no citation provided for the “grabbing them to get their attention” treatment modality, let me provide a possible alternative published in JADD. Interestingly enough, what is written sounds very similar to both diagnostic descriptions, treatment modalities and outcome goals that are already somewhat familiar.
Apologies for the length.
(…) Our data support the multiple causation theory for autism. We have seen no cases in which the disease had psychogenic origins. We have seen its connection with inherited pathology (autistic features of character, autistic
constitution, accumulation of certain psychotic episodes among relatives, presence of fragile X chromosome, phenylicetonuria, and more rarely, other metabolic disorders), and in some cases, we have noted general cerebralorganic
insufficiencies.
(…)
AN APPROACH TO TREATMENT OF CHILDREN WITH AUTISM
At the Institute, we combine medical, psychological, and educational treatments as appropriate for meeting the varied needs of children within each of the four groupings of autism. While strategies for treatment are
designed to address the levels of pathology of development and affect characterizing the children in each of the four groups, they also are individualized for each child and family.
Drug therapy is directed mainly at easing basic pathological conditions with the goal that it function as a supportive therapy. Our experience
shows that adequate medication often catalyzes the effectiveness of other treatments. Our use of medications is governed by the principle of using the minimal affective doses with the least hindrance of psychic development. We also find that drug treatment sometimes becomes necessary for members of the family living in a lasting psychologically traumatic situation.
Psychological treatment has the goals of recovering the child’s need for emotional contact with others, developing the child’s emotional independence from others, using emotional bonds with others for developing activities for the child, reducing the level of the child’s anxiety and fear, and normalizing and developing the child’s forms of interaction with the outside world. The work toward these goals includes developing the ability to have self-preservation reactions, to interact with other people through
verbal dialogue, to accept and use detailed behavioral rules, to attend to the feelings of other people, and to understand the emotional aspects of interactions with others.
Pedagogical treatment begins with establishing an emotional contact between a child and an adult. The treatment has a variety of aims including the development of motor skills, self-help skills, speech, an increased attention
span, the ability to switch attention from one thing to another, and basic school readiness for learning reading, writing, and counting.
Our work with families focuses on both the needs of the parents and on the parent-child relationship. We offer psychotherapy to the parents aimed at softening their reaction to their child’s illness by helping them deal with feelings such as fear, guilt, and perplexity. We help parents understand their child and the nature of their child’s autism, and with them we develop an individualized program for raising the child. We teach parents how to organize their child’s life and how to evaluate progress in the various aspects of the child’s program (…)
Lebedinskaya, K.S., and Nikolskaya, O.S. (1993). Brief report: Analysis of autism and its treatment in modern Russian defectology. Journal of Autism and Developmental Disorders, Vol. 23, No. 4, 675-679.
Gosh John, I wish I had found your “data” before! We could have saved ourselves so much time and money if we had only been physically rough with my son, and if my husband had only loved him. I guess the whole SAHD concept is one which you don’t know anything about, since my husband is one. I guess you don’t know about sensory issues that almost demand roughhousing to force J-man’s body/mind to calm. I guess sleeping in the same room with the J-man until he was almost 1 somehow doesn’t come close enough to forcing him to be social. Maybe if we had just “used the rod, and beat the child” he wouldn’t be autistic?
Also… I guess my dad, who is 62 and severely dyslexic, doesn’t exist either.
Shut up and read for a while before you start making stupid statements.