CNN report -- Autism: Could high U.S. rate be due to over-diagnosis?
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Anonymous
I did read it and saw the quote you/OP provided: Researchers say some children who are given the autism label may in fact be struggling with other challenges, such as developmental delays or attention issues. Of the parents who were surveyed about the reversed diagnoses, about 74% thought the reversals were due to new information, meaning their child started to show developmentally appropriate social skills or language abilities, as opposed to a child being "cured." This is called, common sense--intervention works. BTW, surveying parents doesn't mean the kids aren't autistic; they may have just improved their social skills and language abilities through intervention and still have autism. Again, most people realize that early diagnoses aren't set in stone and early intervention works. It's not "news." |
Anonymous
Ha ha, funny, I don't remember typing this yet I must have. Don't forget feeling guilty from neglecting or not being able to do as much for other siblings. |
Anonymous
Again, it depends on where you live. In states with mandated autism insurance coverage, the diagnosis can make a huge difference. |
Anonymous
And yet, news organizations are writing about, making it news. Also, the study this report was referencing was released earlier this year, 2015. It is not 2 year old news. The above quote from the article makes it clear the diagnoses were "reversed" so it wasn't just the parent's opinion. The CDC method of just looking at kids' records and not actual children has been roundly criticized since they came out with their bogus 1 in 68 number. |
Anonymous
| My DC is 18 and when he was very young insurance companies would stop covering therapies the moment a diagnosis of Autism was made. After years of lobbying and activism, the Autism community changed government insurance rules to prohibit this. As a result, doctors and others would find another diagnosis so that the child would be able to receive services. There is no such reason to do so now. I think this explains the increase in diagnoses in the8 past decade. |
Anonymous
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As to why the numbers are different in the US versus other developed western countries like, say, Canada, i'll give my theory (only a theory) as someone who grew up in Canada but has been living here for 15 years. The health industry is a huge component of the US economy. As a total dollar amount and as number of people working within the health industry. My experience is that this ever-presence of healthcare is self-perpetuating, and it plays a bigger role in people's lives here -- for better or for worse. I don't think any one actor is pushing health treatments on us - I think it's in doctors' interest to push it, but patients equally demand it more. Healthcare is all around us, ergo people want to use healthcare. Example: growing up in Canada, we had "colds". When I went to university, the American kids all had "sinus infections", "strep" and other medicalized terms. I remember we Canadians were amazed that the americans used to all go to the on campus health clinic to get antibiotics for these issues. They were just used to getting things named and getting things treated.
And carrying that over to what I see when I live in the states: I've had friends say that they couldn't live with single payer healthcare because they are used to using as much healthcare as they want and are okay paying extra for it. This was said in the context of wanting the freedom to go to 5 different doctors until she finally got someone to give her a diagnosis she was looking for. I guess theoretically you could do this in Canada, but I think Canadians would cringe at the idea of what they saw as unecssary consumption of a social good. I find that when I go to a doctor here, there is always a "diagnosis" and a treatment. Oh, my feet are sore and have grown a size since my baby was born - $650 orthotics from a specialist! And while he was doing it, my doctor noticed my baby toe turns funny - insisted on doing a treatment on the spot to cut a little muscle in the toe to release it. Insurance paid $1200. If I went in complaining about those things in Canada, my general practitioner would check to make sure nothing major was going on, and then say "feet often grow after babies are born" and send me on my way. And a Canadian would never think of going to a specialist to get a second opinion. So knowing this context, chances are the average Canadian would never even raise the issue with a GP. I'm not saying one approach is better than the other. But I think both have pros and cons. In the US system, maybe more people who need treatment get it. But it costs a lot of money. It costs a lot of time and stress on the patient's part. There's something simpler in Canada about not even worrying that something is wrong. Yeah, my baby toe never got diagnosed and never got fixed. And sometimes it rubs weird in certain shoes. But life goes on fine. So fast forward to SN diagnoses and I think we in the US are used to looking for answers from doctors about any variations from the norm. We're used to paying lots of money (if we have it) to get stuff fixed in the medical community. So we are more likely to seek out a diagnosis to explain why our kid is different, and the doctor is more likely to recommend coming back for follow up appointments and seeking out therapy. We are all pieces in a big medical complex machine here. So yes, that is going to lead to a lot more SN diagnoses. Some of those kids probably really have something that fits a diagnosis. And in Canada, that diagnosis gets missed. But does it really matter? yes, treatment "helps". But so what if that kid just grows up to be a bit quirky but nonetheless successful engineer. Just like the uncle we all have in our family tree who clearly has the same issue but never got diagnosed. The kids with big issues still get spotted in Canada and treated. But the kids who get diagnosed in the US and grow out of it (and we can argue about whether they were "cured" or grew out of it or never had it - but it doesn't matter) don't get diagnosed in Canada but also avoid years of money spent on therapies, doctors appointments etc, and the unended stress that gets heaped on the parents of special needs kids. It's like mammograms - they're now saying that, statistically, all these fringe cases of breast cancer are not severe enough to warrant the money spent on therapy and the psychological trauma of getting diagnosed with cancer, when statistically those odd cells are unlikely to ever evolve in a dangerous cancer, and if they do, you will ultimately have other severe symptoms such that the mammogram is unnecessary. Just my theory!! |
Anonymous
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My child was diagnosed with high functioning autism at 6. He has severe anxiety and behavioral problems with rigidity etc. He is in a special education school b/c he couldn't handle public school.
We have been to psychologists, play therapists, psychiatrists, neuropsychologists, social skills groups, and the ER. We tried two different special needs camps ($$$$) but he couldn't handle them. One of them was kind enough to refund half our fee back. A portion of the neuropsych and ER bill was paid for by insurance. Everything else has been completely 100% out of pocket cash. What are these magical free services and therapies people are desperate for and why haven't we received any? |
Anonymous
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^ I agree with the Canadian poster above. I stated this before, the range of "normal" is becoming smaller and smaller. We need an explanation as to why a child is difficult, or isn't "normal" (now being a very narrow range).
Yes, there are cases where a child absolutely needs services, but as the PP stated, 30 yrs ago, some of these quirky kids are now engineers and the like. They have their challenges in life, as do we all, but they are still able to hold jobs and have families. I know, not all can. But I think the range of what types of difficulties or challenges a kid has become so broad now. Every difficulty needs a diagnosis and some form of therapy. I remember an interview with Liam Neeson who was talking about the prevalance of American actors having therapists. He said something like just because your mom didn't hug you enough you need to go see a therapist. I'm summarizing here big time, but I think it's true. I wonder if this is part of the reason kids these days don't have any grit. |
Anonymous
Here are state by state rules on autism coverage. Not sure why your services aren't being covered. Why don't you arm yourself with knowledge and find out? https://www.autismspeaks.org/advocacy/insurance/faqs-state-autism-insurance-reform-laws |
Anonymous
Do you have a special needs child? Insurance might technically cover a service for an "in network" provider, but there are no providers in your area who accept insurance. There are practically zero child psychiatrists in the entire DC metro area who are taking new patients who are "in network". Ditto for psychologists, neuropsych evals, social skills groups, etc. Maybe you should arm yourself with some more knowledge before you post. |
Anonymous
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I also think that our public school education is asking WAY TOO MICH, TOO EARLY from children - which makes many children "fail" to meet those goals, and look like they have "needs."
I know know know (as an early childhood eduacator) that many children do have ASD, ADHD and anxiety. But I also know that kindergarten children need more play-based education, more time to play outside than 20 or 30 minutes some days not all days, and that our children no longer walk to school, even those who live close enough to walk, because their parents must leave the house to get to work before the kids could leave so those kids end up driven to school or bused. Leading to not even having a 20 minute walking time when those kids could get their wiggles out before sitting ALL DAY in kindergarten. Remember in the 70s when kindergarten was play-based? When it had dramatic play, a post office area, when you played outside on the climber, swingset (yes, over concrete, I'm not saying it was perfect) but those kids got exercise. In my 1st, 2nd and 3rd grade classes we went outside in the morning for recess, then after lunch we got a 2nd recess, then we walked to/from school - we got a lot of exercise. So those active, hyper, quirky kids got a lot of exercise, which helped them focus. Oh, and they didn't need to sit the whole day starting at 5 years old, either. Sigh. I'm so frustrated by our school system, and I do believe that some kids (not all) end up being diagnosed because they don't fit into our developentally inappropriate education expectations. And, with all this sitting and focusing, and trying to make them read in September of Kindergarten year, we are still behind many other school systems. Perhaps trying to push it down doesn't work? That we should focus on teaching when it does work? |
Anonymous
For sure, yes. Our neuropsych diagnosed DS with Aspergers (before the name changed to high functioning autism or ASD or whatever it is now) all the while telling us she was uncomfortable with the diagnosis but wanted him to be eligible for accommodation should we ever return to the public school system. She said he was definitely not neurotypical but didn't clearly and neatly fit any particular diagnostic category, so she went with the closest thing. |
Anonymous
I have not "armed myself with knowledge" for Dc or MD, but in VA, only certain kinds of insurers have to provide reimbursement for autism-related services, and it is only for ages 2-6. So *if* pp had had a particular kind of plan, and *if* pp could possibly find a provider who accepted that kind of insurance (the real unicorn for the services she listed), then pp probably could have had some expenses covered between the dx sometime at age 6 through the 7th birthday. |
Anonymous
+1 And autism speaks is just a well paid advocacy group. They do nothing to help families directly with all that fundraising - it does not go to pay for treatments, assistance or supports for families. It just lines the pockets of the staff. Just because it is mandated, does not mean insurance will pay or the providers are decent. Our insurance only had three providers within 45 minute drive - one we were warned to stay away from, one never returned calls and the other was terrible - she did nothing, claimed she was a feeding specialist but no food in the office, and her perfume was killing me and my kid would not go near her. She sang a few songs with a CD player and did one puzzle and called it speech therapy. We private paid for over a year till we found a doc who could get it paid for. We've gone out of state for evaluations as it was cheaper, etc. Arm yourself with a website that is set up to fund raise and not actually help. No thanks. |
Anonymous
I don't remember K. being play based. I remember going to learn. If we are behind, then we need to look at our academics and parents need to support education vs. make up excuses on why we should dump down our kids. My kid is special needs and he is fine with academics. If a kid without special needs cannot handle it, something more is going on. |