Why is everything now just ASD?
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Anonymous
I wholeheartedly agree. Don't get too hung up on the retired PDD-NOS diagnosis. It meant autism-lite to some and delayed but not autistic to others. We got a MERLD and PDD-NOS diagnosis when my kid was 3. We did a neuropsychological evaluation at age 6 and was diagnosed with dyslexia and dysgraphia. These fall into the "Specific Learning Disorder." Did the different names change the kind of help my kid needed? Nope! |
Anonymous
OP is right to be careful about who she takes her child to. Autism is highly subjective: https://www.psychologytoday.com/blog/child-in-mind/201508/dilemmas-in-diagnosis-is-it-autism-anxiety-or-neither Dilemmas in Diagnosis: Is it Autism, Anxiety, or Neither? The need for a label may limit our search for understanding and healing Posted Aug 30, 2015 For his PhD thesis, Phech Colatat at MIT Sloan School of Business Management reviewed records from three clinics established specifically for autism spectrum diagnosis. At two centers the rate was around 35% while at a third the rate was 65%. The MIT news release about the study states: Those rates persisted over time, even when Colatat filtered for race, environmental factors, and parents’ education. But then comes what may be the most interesting finding: ..when doctors moved from one clinic to another, their rates of diagnosis immediately changed to match that of the clinic as a whole. Colotat, based on extensive interviews and observations within the clinics, develops a theory for this phenomenon: imprinting. The article continues: He conducted dozens of interviews with the clinicians to get a sense of how they had learned to diagnose autism. What he heard was the same few names again and again. At one clinic, a consultant from a nearby university had served as an intellectual mentor to the staff. She had impressed upon them how subtle the signs of autism can be, and as a result, they tended to give out the diagnosis more readily. At another, the clinic’s first director instilled the belief that autism can look like a lot of other conditions, which caused staff to be more conservative. These charismatic individuals made an impression that lasted. |
Anonymous
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You can't claim that diagnosis is highly subjective, PP. The grad student's "imprinting" theory is just that a theory not proof and based on just 3 clinics--out of how many in the U.S. that exist?
It's not surprising that clinics that specialize in autism actually give autism diagnoses. You're not getting a neutral sample--parents were seeking help for their kids. Who's to say these kids don't have autism or wouldn't get the same diagnosis somewhere else? I'm sorry you're so bitter over your kid's initial autism diagnosis. I hope you find peace with it some day and find some gratitude in your heart for the developmental pediatrician who diagnosed your son. |
Anonymous
You are too funny. All of your excuses don't change this fact: An autism diagnosis is totally subjective! So make sure the person evaluating your child is really, really good. http://www.huffingtonpost.com/albert-einstein-college-of-medicine/practicing-medicine-in-au_b_11321660.html Let's hear from a neurodevelopmental pediatrician, shall we? Practicing Medicine In Autism’s Diagnostic Gray Zone On any given day, there are children whom I evaluate who are clearly autistic. They can be diagnosed soon after they arrive in my office. Then there are children who are clearly not autistic. They may have another condition—language impairment, intellectual disability, attention deficit hyperactivity disorder, hearing impairment, an emotional problem—but not autism. Many children fall into what I call the diagnostic “gray zone.” They may be quite young and have social weaknesses. But are they mildly autistic or just shy? Or they may be toddlers with irritable temperaments who eventually warm up after adjusting to being in my office for a couple of hours. Or a child may be a globally delayed toddler, who has a hearing or visual impairment and therefore experiences difficulty engaging with others. .... No one prays for an objective autism test — a gene or an MRI finding or other biomarker — more than I do. But in the meantime, I make use of behavioral instruments that help me organize my findings and communicate them to a highly experienced multidisciplinary team of colleagues, while reaching out to get feedback from parents, teachers and daycare providers. In other words, I use the tools available to help families navigate the various systems and therapeutic services to help children achieve the best outcome. While my world might not be “black and white” — something I originally thought I wanted in my profession — I now accept the various shades of gray that are an inevitable, and everyday, part of my professional life |
Anonymous
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Again, you're pathetic and ill-informed, PP.
There are many evidence-based tools for assessing autism. Of course there are shades of gray. No one is arguing that. A test doesn't have to be testing human tissue or performing a brain scan in order to reliable and evidence based. Why not read something by Stephen Camarata from 2014? https://medschool.vanderbilt.edu/developmental-disabilities-lab/files/developmental-disabilities-lab/public_files/Publications/Early%20identifi%20cation%20and%20early%20intervention%20in%20autism%20spectrum%20disorders-%20Accurate%20and%20effective.pdf "However, in clinical practice, autism was often first diagnosed in early school-age or even older children, and toddler or pre-schooler age diagnoses were much rarer. Because of this, there have been ongoing efforts to develop more specific nosology and objective measures to capture the symptomology at earlier and earlier ages (Lord & Jones, 2012; Volkmar, Cohen, & Paul, 1986), including the development and refine- ment of the Autism Diagnostic Observation Scale (ADOS; Lord, Risi, Lambrecht, Cook, Leventhal, DiLavore, et al., 2000; ADOS-2; Lord, Rutter, DiLavore, Risi, Gotham, & Bishop, 2012). This, in turn, has led to more systematic diagnostic practice..." "Proposed autism guidelines in the DSM-5 (Swedo et al., 2012) may shift inci- dence and eligibility parameters without necessarily seeing a real change in the actual incidence of ASD (see report from the US Centers for Disease Con- trol, 2012)." "Candidly, there is no doubt in my mind that toddlers with ASD can be reliably identified and that early intervention is potentially highly effective in reducing long-term ASD symptomology." |
Anonymous
For years, we got a run around despite a clear need. They did everything they could to lose our file, and not provide services. You either focus on an IEP and fighting the system, or you go private and get what your child needs. It would have cost us more to get an educational advocate or an attorney than to pay out of pocket for services. What would you choose? I have tried again this year for an IEP, provided a new evaluation and nothing. Its great if you can get one, but we are not at a school willing to and its not worth my time or energy to fight it. Autism is a very subjective diagnosis. Its a check list that can easily be interpreted differently by each clinician. |
Anonymous
Well first, thank you for the link -- I had not seen this. I've met personally with Dr. Camarata six times in the past decade, spending a good 10 hours at least one on one with him, and the graphs you pulled out are really cherry-picking what he is saying. Take a look at this: "It is clear that those children presenting with full autism symptomology, especially displaying noticeably reduced verbal and non-verbal social engagement, are relatively easy to identify at an early age, and that the long-term stability for this early identifi cation is relatively high. However, there is far less diagnostic stability over time for the children who do not display full autism symptomology and are placed on the “ Autism Spectrum ” based on PDD-NOS diagnosis. Clearly, testing the effectiveness of early intervention requires accurate early identifi cation. At this time, it is safe to say that this can be done more readily in AD but would be more problematic in the PDD-NOS form of ASD. It is also clear that confl ating or pooling AD and PDD-NOS into an “ ASD ” treatment group will likely yield high variability, low stability, and potentially uninterpretable or inconclusive results. |
Anonymous
It's not hard to find salacious headlines, PP, but it's obviously hard for you to actually read the articles you quoted. Asperger’s History of Overdiagnosis (which is an opinion piece—not proof and not relevant since Aspergers is no longer a diagnosis) http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.html?_r=0 "A 1992 United States Department of Education directive contributed to the overdiagnosis of Asperger syndrome. It called for enhanced services for children diagnosed as being on the autism spectrum and for children with “pervasive developmental disorder — not otherwise specified (P.D.D.-N.O.S.),” a diagnosis in which children with social disabilities could be lumped. The diagnosis of Asperger syndrome went through the roof. Curiously, in California, where children with P.D.D.-N.O.S. were not given enhanced services, autism-spectrum diagnoses did not increase. (through the roof? yeah, real scientific is that the same as a bushel and a peck?) --Again, school designations are not medical diagnoses. Study Suggests Autism is Being Overdiagnosed http://www.nbcnews.com/health/kids-health/study-suggests-autism-being-overdiagnosed-n450671 The CDC found a 30 percent spike in autism diagnoses among 8-year-olds between 2008 and 2010 to one in 68 children. It was a startling finding and one that fueled fears that something was causing more children to develop the condition. But a report published earlier this year suggested that many cases of developmental delays had simply been re-classified as autism in recent years... --Yes, it's so hard to read the next sentence to draw an accurate conclusion. 1 in 68 Children Now Has a Diagnosis of Autism-Spectrum Disorder—Why? http://www.theatlantic.com/health/archive/2014/04/1-in-68-children-now-has-a-diagnosis-of-autism-spectrum-disorder-why/360482/ The article mentions a UNC study:, "A 2007 study out of the University of North Carolina at Chapel Hill found that over 30 percent of children diagnosed as autistic at age two no longer fit the diagnosis at age four..." The study also said, "Daniels said. “ASD can be difficult to diagnosis, and if you consider only very young children, you’re likely only to find the most severely affected cases. It's this study http://www.unc.edu/news/archives/feb07/autism020807.html and it concludes “UNC study shows state autism rates in line with national average…” The author of the article in the Atlantic writes, "The parallels between a slow-to-mature toddler and a would-be-mildly- autistic one are so striking that the prospect of a false diagnosis is great." Then concludes, “It's important to not overstate the case. The possibility that a slow-to-mature toddler will be confused as a moderately or severely autistic is slim.” "Data out of the famed Yale Study Center have demonstrated that toddlers with delayed language development are almost identical to their autistic spectrum...The science stacks up in favor of catching and treating ASD earlier because it leads to better outcomes. Dr. Laura Schreibman, who directs the Autism Intervention Research Program at the University of California, San Diego embodies the perspective of most experts when she says, “Psychologists need to advise parents that the ‘wait-and-see’ approach is not appropriate when ASD is expected. Delaying a diagnosis can mean giving up significant gains of intervention that have been demonstrated before age six.” --So basically, PP, not every kid who is a late talker needs intervention, but it really doesn't matter if they do. We are increasing the chances of helping kids with Communication Disorders including autism get the help they need. |
Anonymous
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and more from the article: Frankly, the Warren et al. (2011) review should serve as a wake-up call to clinical researchers, as the evidence base supporting early intervention is not nearly as strong as one would suppose. However, this will also require fair and objective studies and, more impor- tantly, an unbiased approach to systematically ask- ing the hard questions about what works and what doesn't Testing intervention effects on the marginal cases, those who have minimal ASD symptomology, while otherwise warranted, is not likely to lead to interpretable, credible studies. On the other hand, testing early intervention exclusively in the more severe cases, that is, those who display classic, full symptom AD, is limiting our evidence to precisely those children who are least likely to change and, thus, is a very diffi cult challenge. |
Anonymous
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Anonymous
Oh, honey, read the article. The quote you gave is referring to the Rondeau et al. (2011) study. |
Anonymous
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Follow the money conspiracist, I'm still waiting for you to back up your claims:
11:23 Money is fueling the rise in diagnosis, plain and simple. If a doctor codes it as autism, insurance pays. In some states, it's like a golden ticket to services. If they don't, all those therapists out there don't make money. And parents curtail getting speech therapy, OT, and certainly ABA because the costs become overwhelming. So parents take a diagnosis they don't agree with because it gets their child some therapy. But there's a very dark side to accepting an inaccurate diagnosis just to get services. Would you, for example, accept a cognitive impairment diagnosis for a child who is not cognitively impaired? Because hey, they'll pay for services then! (This makes no sense, PP. If your kid needs therapy, they need therapy. You didn’t prove a “very dark side,” you’ve only shown once again that you have non-sensical arguments.) 17:08 It's a fact of life that diagnosis follows the money trail. Developmental pediatricians often just give an autism label with very little testing…When money is involved, no grand conspiracy is needed. Most everyone is incentivized to go on the path that gets money for services for the child. 14:01 The money trail of autism is easy to follow, actually… |
Anonymous
Actually, no. Read Dr. Camarata's WHOLE article, which was much more nuanced that you let on. To the Asperger's quote, it's really the same thing. Diagnosis goes through the roof when someone will pay for services. Anyway, like I said: You are free to believe what you want. You are not correct, and many people on this thread have told you that their firsthand experience does not agree with your theory. The Dr. Camarata piece is a great find; although sadly, it does not say what you think it says. Take a deep breath, and read it all the way through with an open mind. |
Anonymous
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"Candidly, there is no doubt in my mind that toddlers with ASD can be reliably identified and that early intervention is potentially highly effective in reducing long-term ASD symptomology..." --Stephen Camarata |
Anonymous
+ 1,000 |