There's a saying among those who become familiar with Autism.
"If you've met one kid with Autism, you've met one kid with Autism"
There are certainly clear cases... but the trouble is identifying the non-traditional and less severe cases. These methods are great, but with early intervention being so critical it's doesn't help with diagnosing younger children (from what I read... seems patient would need more cognitive ability).
As a parent who has recently run the gauntlet of diagnosis the most frustrating part of the lack of awareness for younger children. Based on all my reading early intervention can have a tremendous impact of future outcome (before 3y/o is really the sweet spot).
There's so much stigma on classifying young children early that parents are often reluctant to seek out diagnosis and treatment. My daughter was diagnosed at 15 months and has since made amazing strides.
If there was one thing I wish I could pass on to every parent it's that there is absolutely no harm or shame in doing diligence if you feel something isn't right. Therapies are play based and are great for even nuerotypical kids. If you suspect a delay or risk... talk to a specialist ASAP.
I'd also pass along, for those in the US, that an "official diagnosis" qualifies your child as having a learning disability, which means that you have a unique opportunity to form an actual team of people at your child's school who will be better equipped to manage your child's particular idiosyncrasies, and who will all make whatever modifications and accommodations are necessary to ensure your child gets the best education they can.
Of course, individual schools may still have a poor array of teachers, but in my experience as a father of a nine year old boy with autism, being a proactive and considerate parent who wants to be part of the school support team goes a long way to making the most of your child's time in school.
My son had made a comment that, taken literally, seemed like a threat to another student. He was, in fact, verbalizing one of the many random thoughts we all have but most of us filter before it becomes spoken aloud. The other child's parent rallied to have my child removed from THE SCHOOL (my kid isn't violent in any way, nor does he show anger physically) but the presence of an IEP [1] protected my son, and the school district administration came to his aid. My role as a member of his IEP team (as opposed to just being an ornery parent) made sure that my son's needs were met, and his behaviors were evaluated in the context of his differently-wired brain.
Be an advocate for your child. Don't be defensive, and don't be a dick. You'll be surprised at how many people sincerely want your child to succeed.
My wife is an Early Years Speech and Language therapist, so she is regularly exposed to children with autism.
Your daughter is lucky to have a proactive parent. Even when cases are identified within the system, by nursery staff for example, it seems to be more common than not that parents become very defensive about the idea of seeking further help. And actually, as a parent, I can understand it - but having seen first hand the difference professional help can make, especially in those early years, I would do everything in my power to get expert advice.
In the UK we have the NHS, and even though the waiting lists can be long (because these are the areas that tend to be the first to go during budget cuts), help is freely available. And it's not just autism we're talking about. There could be all manner of things that can contribute to a delay in those early years. There are people who can literally make the world of difference to the rest of child's future, and they really want to help.
"In the UK we have the NHS, and even though the waiting lists can be long (because these are the areas that tend to be the first to go during budget cuts), help is freely available."
Help is also generally, if not universally (I just can't guarantee it since this is often state-level), available in the US for all manner of developmental issues. And, uh, I didn't have any problems with waiting lists, either, with either of my children.
(The portrayal of the US as some sort of vast health-care wasteland often has more roots in politics than reality, which is not to say that there aren't problems, and even in some cases severe problems, but nevertheless, the problems are often greatly oversold because it benefits certain people very much to do so, a fact that should never be forgotten in these discussions.)
The biggest problem with these resources is people knowing they exist at all, and also, as mentioned by others, denial on the part of the parents. (My wife and I have generally avoided denial but we can certainly see it in our extended families.) My wife and I know of at least two other children that we believe are probably autistic or something (not trying to diagnose, just observing an awful lot of similarities to the other autistic children we know... you get to know many of them when you go to the meetups), but the parents won't even hear the word "autism", let alone have it checked.
Lacking comprehension of the problem and the causes, it seems reasonably carefull not to blindly admit your child into care based solely on the authoritive argument. Possibly, doctors cannot explain it propperly either and I'm under the impression that the causes aren't really known. Now, if the parent's lack of proficiency in childcare was responsible, that would be embareassing indeed, and if the percentage of autism
As my parents said when they saw the therapy my daughter was receiving (and took part actively): "I wish we had this type of training when raising our kids".
If we have another child and they are neurotypical... we'll raise them using the same techniques we've learned in supporting my daughter. I encourage any parent who wants to build a stronger bond and more thoughtful kid to read up on play therapies (floor time, speech therapy, OT, PT)... it's been some of the most rewarding and fun time I have had as a parent.
autism therapy isn't something where you "blindly admit your child into [another's] care".
It's typically family therapy -- really, a form of parent training. Our speech language pathologist was fond of reminding us that she spent one hour a week with our son and we spent over a hundred waking hours with him. I would say the best outcome of Early Intervention was that I had better techniques to help my son learn to communicate, express himself, respond to stressful situations, etc.
And the techniques are actually useful for all children, not just on the autism spectrum. I found I was able to use the same techniques to great effect when I taught math in the public schools.
100% agree. As a parent of a child with Autism, I can't stress enough the importance of strong, early intervention. We received our diagnosis at 2yrs,8mo. Our son was frankly autistic by any definition. We dove in hard, and for many years had close to 40hrs of various therapies per week. (OT, PT, Speech/Language, Behavior, Social, etc.) He had an IEP, and we advocated, because you have to.
He's 11 now, is in a neurotypical classroom with no formal support and thriving. He (and we) still work hard at his challenges... but we all have challenges. Neuroplasticity is a very real thing, and strong early intervention is sooooo important.
What they did is take a control group that's the same size of the autism group. Then they did what's called leave-one-out cross-validation (which is exactly what it says, train on the entire set leaving one out, then use that one for validation and do so all ways). The measure they chose (Accuracy) is not without its flaws, but it would not be susceptible to the one you mention.
For instance, if you took 100 negative and 100 positive and then ran your test, you'd expect an accuracy of something a little more than 50%.
Under this methodology, how meaningful would having more data points be with respect to statistical meaningfulness? The study only appears to use 17 people in each group (for a total of 34 people).
I think it's just the headline that's misleading, the abstract says quite clearly: "Moreover, machine learning algorithms classified individuals as autistic or control with 97% accuracy from their fMRI neurocognitive markers."
The "or control" doesn't tell you exactly what the false positive rate is, but at least it sets the upper bound at 3%.
I would be careful reading too much into one study. If you read their Methods section, you can see that they only picked adults with "high-functioning autism" which is so loosely defined as to be meaningless. Is it supposed to represent Vineland scores, or ADOS scores, or IQ, or "doesn't live in Mom's basement", or what?
But if you see that they also cut anyone from the study that has a family history of autism (even though autism is highly heritable), cut anyone with developmental delays (and almost all people with autism have or had delays in some realm, from speech to fine motor), cut anyone with anxiety disorder (extremely common in autistic people), then really you're left with probably a bunch of almost-entirely-guys with what used to be called Asperger's and is today (well, as of DSM-5) lumped back in with autism the broader category, for better or for worse.
Point being, be careful not to think this is a representative sample of a big, big category.
All that being said, I would love to see how these results stack up against another recent project based in San Francisco at UCSF that is doing fMRI scans of kids (not adults) with sensory processing disorder (SPD) but who do NOT have autism.
The project's lead, Dr. Elsya Marco at UCSF, is studying something similar: biological evidence of SPD and how it can be distinguished on scans from autism. The two disorders often go together, but she's trying to tease apart why some people are hypersensitive to sensory stimuli and yet DON'T have autism.
As if autism is a "thing" that you "have". HIV is a thing that you can have. We check your blood and say "yup, you got HIV in there" or "nope, you're clean". Autism, like many terms, isn't a thing. It isn't even a state. It's a description of a state. But it's not a complete description of that state. It's really just a loose description of part of a state. Every case is different. Every autistic person is unique.
Autism is a catch all just like Cancer is a catch all. It works to get you into the ball park.
Yes you are 100% right BUT also 100% wrong (just semantics I don't know if we really disagree) there are subsets of Autism and Autism is a thing scientifically and medically. Just like depression is a thing that you can't get a specific test for doesn't mean it isn't a thing. Having adopted two boys with a very mild form of Autism called Aspergers, most doctors use to use the term High Functioning Autism. You can also have sever Autism, AKA low functioning Autism. When working with children or parenting I can specifically look at where they are. So while every person is unique you can be categorized as high functioning or low functioning autism and given many other sub-categories. The only reason why I say this is that many people dismiss early diagnosis and then their child doesn't get early intervention. The earlier the interventions start the better the outcomes.
Interesting note is Korea was saying they have almost no cases of Autism. Then the medical and scientific research conducted in Korea showed they had just as many children with Autism they just went undiagnosed medically.
>Interesting note is Korea was saying they have almost no cases of Autism.
The same way Iran has no homosexuals. The stigma in those cultures are so strong, the condition is denied or re-routed into something more culturally pleasing. In Iran homosexuals are often given the choice of lengthy prison sentences or gender re-assignment surgery. In Korea, autism is swept under the rug, until fairly recently. In Japan, kids fall into "Hikikomori" or NEET categories and never seem to get the help they need.
Gonna throw a similar but slightly inverted anecdote out there as well. My sister is a PhD psychologist who works with children. She had to significantly reduce the number of children she forwards for ADHD testing because 100% of the time the result was "positive" and they were medicated. And she was sending in really borderline cases "just to be sure". Thinking she was being safe and responsible for the child's well being. Now she has to act as a blocker and only forward children who she is really, truly confident need it.
> ADHD testing because 100% of the time the result was "positive" and they were medicated.
They actually have a qEEG test that does a very good job highlighting differences between the ADD brain and a neurotypical brain. This is at least 10 year old research, so i have no idea where it is today.
If it is useful, I don't know a lot about autism, and for me your comment is super cryptic. What are you trying to say? Isn't autism sort of a dimension? I've heard about "the autist spectre", and the prevalence in males, and that's the idea that I got.
That would be "spectrum" as its quite smooth and analog. Unlike a medical condition like a broken bone where you either got two pieces or one and in between is kind of unlikely.
Historically no test existed other than behavior observations. Oh look a cluster of behaviors, we'll call it a disease.
That leads to some severe cultural problems like just medicating the hell out of people until their vegetate. Not a very nice thing to do.
The highest functioning people aka closest to normal (whatever normal is...) tend to not appreciate being drugged into submission, eliminating any chance of higher level human functioning. (edited to emphasis the side effects of most medications for autism symptoms tend to be intensely punishing both physically and mentally)
Its rather like obesity, there's quite a range and how much someone has and how much someone needs to be forcibly "fixed" is open to quite a bit of opinion.
OP is correct in that they selected a group of very high functioning people and controls, so what if anything that would have to do with low functioning people is mysterious and its quite possible they have little in common other than symptoms / behaviors. So saying "we can detect autism" is kind of like saying "we can fix broken computers". Well, define broken computers narrowly enough and ...
On the other hand OP may not have read the article because OP is claiming "we can't" and similar, when "we now can". At least in a highly restricted setting with specially selected test subjects.
It does not appear to be a magic bullet along the lines of a glucose tolerance test being pretty effective at diagnosing diabetes.
> Historically no test existed other than behavior observations.
That's not too different from what I read this test as doing, except that it's observing neural activity while observing behaviors. Naturally, neural activity during behaviors is strongly correlated with features of the behaviors themselves, so it's quite possible that this is just another way of operationalizing/coding the behavior-based diagnosis approach. That could have advantages (maybe it's more repeatable, for example), but they don't appear to be claiming that they're doing something radically different, like identifying causal neural features.
> Historically no test existed other than behavior observations. Oh look a cluster of behaviors, we'll call it a disease.
What medical literature calls it a disease? I've only ever heard it called a disorder. Why wouldn't they classify a bunch of behaviors under the same umbrella? They've gotten better and better at subdividing the class of disorders. I'm not sure i understand the problem with grouping related disorders together.
> That leads to some severe cultural problems like just medicating the hell out of people until their vegetate. Not a very nice thing to do.
You can't blame cultural issues on the way medicine groups disorders. This isn't One Flew Over the Coo-coos Nest.
> someone needs to be forcibly "fixed" is open to quite a bit of opinion.
Jesus Christ! Some sympathy for parents and caregivers. You act like they don't want what is best for their children.
> OP is correct in that they selected a group of very high functioning people and controls, so what if anything that would have to do with low functioning people is mysterious and its quite possible they have little in common other than symptoms / behaviors.
I'm not sure what you want. You don't like them grouping based on observable behaviors, but you are negative at them trying to find markers through fMRI. If anything, if it works on high functioning patients who have less noticeable behaviors, it is more likely to work on low functioning patients as long as they can understand the tasks. The difference in brain activity should be greater in low-functioning patients (although the algorithm needs to be trained on that set of data).
> So saying "we can detect autism" is kind of like saying "we can fix broken computers". Well, define broken computers narrowly enough and ...
It's the opposite of that. They've proved finding differences in high functioning "computers" so it should follow that finding differences in low functioning "computers" is easier (if you can find a way to get cooperation).
> It does not appear to be a magic bullet along the lines of a glucose tolerance test being pretty effective at diagnosing diabetes.
There was only 34 individuals in the experiment. It needs a tremendous amount of further testing. From the article:
"Despite the very high sensitivity and specificity of the approach (33/34 or 97% of participants classified correctly), the study has clear limitations. First, the current paradigm, requiring significant cooperation during thoughts about social interactions, would be difficult to apply to participants with lower-functioning autism. Second, it is not yet known whether this type of classification can differentiate autism from other special populations, such as those with other developmental and neurological disorders. Furthermore, it would be desirable to develop a neurosemantic screening battery that contains a variety of items capable of evoking altered representations in a number of psychiatric disorders, along with a classifier that accurately identifies the disorder of individual participants. Each disorder could then be identified or diagnosed on the basis of its own characteristic alterations of thought. Because of the many co-morbidities among psychiatric disorders, one might expect classification of some individuals into more than one category. Fortunately, these limitations have the potential of being overcome through further research efforts."
Is autism hard to diagnose? It seems that if anything the important thing about this study is the factors it discovered that allowed the populations to be separable.
Autism actually can be hard to diagnose, as there are many different flavors of symptoms. This should be read as more of a machine learning exercise in attributes (so yes, you're correct), not as a medical breakthrough.
I've not read the paper fully but it does look an interesting piece of work. I did notice that the controls were aged and IQ matched which doesn't suggest they we looking to differentially diagnose Autism from other disorders which is likely to be the more useful clinical technique. Also, the subjects were adult and I would expect most diagnosis to be performed in a much younger age group. This isn't the first attempt to apply fMRI techniques to the understanding of autism, plenty of prior work here (http://goo.gl/oW41Vm).
Earlier in my career I did some fMRI and, whilst an interesting technique, I've never been convinced that it quite delivers on the claims. Firstly, you aren't looking at an electrical signal but rather changes in blood flow which are (reasonably) assumed to be coupled with areas of increased neural activity. This felt to me a bit like trying to debug a computer program by pointing a heat sensitive camera at your motherboard.
Also all fMRI experiments are characterised by a block design - periods of activation and inactivation - and the response is expected to correlate with these in some way. However, the brain is pretty busy and thus how does one select a baseline; what about the parts of the brain that just stay on?
>Earlier in my career I did some fMRI and, whilst an interesting technique, I've never been convinced that it quite delivers on the claims. Firstly, you aren't looking at an electrical signal but rather changes in blood flow which are (reasonably) assumed to be coupled with areas of increased neural activity. This felt to me a bit like trying to debug a computer program by pointing a heat sensitive camera at your motherboard.
It's pretty crude but it works. fMRI has been useful for a ton of things, it's even possible to read people's minds with it (from seeing what words they are thinking to an entire video reconstruction.)
There exist very accurate tests for autism, but /getting/ a diagnosis can be difficult. A teacher spotted autistic symptoms in me back when I was ten and recommended I get tested. It wasn't until three years later that a couple thousand dollars got taken out of my college fund and I received a day's trial of tests to determine that I have it. Insurance did not cover the procedure.
Now-a-days, people have more understanding and awareness (this was a little over ten years ago), but it is still an expensive procedure, involving many specialists of different areas, sometimes neurologists and brain scans.
"If you've met one kid with Autism, you've met one kid with Autism"
There are certainly clear cases... but the trouble is identifying the non-traditional and less severe cases. These methods are great, but with early intervention being so critical it's doesn't help with diagnosing younger children (from what I read... seems patient would need more cognitive ability).
As a parent who has recently run the gauntlet of diagnosis the most frustrating part of the lack of awareness for younger children. Based on all my reading early intervention can have a tremendous impact of future outcome (before 3y/o is really the sweet spot).
There's so much stigma on classifying young children early that parents are often reluctant to seek out diagnosis and treatment. My daughter was diagnosed at 15 months and has since made amazing strides.
If there was one thing I wish I could pass on to every parent it's that there is absolutely no harm or shame in doing diligence if you feel something isn't right. Therapies are play based and are great for even nuerotypical kids. If you suspect a delay or risk... talk to a specialist ASAP.