Myths about autism
bbc.com
bbc.com
The difference between someone considered "high-functioning" and "low-functioning" is often dramatic.
Until we separate the spectrum into a more distinct subset of disabilities (as well as abilities), the autism community will continue to be fractured into those who consider their autism a gift that want to "keep" their autism pitting themselves against the families of the most severely impacted who are advocating for those who often can't speak for themselves.
I explained that autism didn't look like that in all cases, and if she wanted autism she'd have to take the autism of my child who at 11 isn't capable of these types of interactions and generally has a rough go of it.
I think most people now realize how different the ends of the spectrum can be, but the high-functioning end of the spectrum sometimes engage with those advocating for the low-functioning end. If you like your autism, keep it - but those of us impacted by the "other" autism will keep advocating for our children. Separate diagnoses would help this tremendously.
We've gotten better at understanding where people are coming from with statements like this... the first statement ("rather have autism") is just bizarre.
It's pretty common that when someone learns our daughter has autism they say "She's so beautiful, she won't have any trouble". I'm still not sure what that means.
We get the "she's beautiful" thing often as well. If I had to guess, I think it's a reference to the fact that her disability may be harder to recognize than some others (Downs Syndrome or a prominent physical disability come to mind) and she'll be able to blend in when she's not exhibiting more noticeable and negative autistic behaviors (stimming, vocal stimming, self-injurious behavior, aggression). She has a friend with Downs and I like to watch how other children and adults react to the them when we're in public together.
The other thought I get when I hear "beautiful" is, in basic terms,"her looks are a good quality that helps balance the less attractive aspects of her behavior". We're very conscious of keeping up her appearance (hygiene, clothes) primarily for the purposes of the school and others who take care of her. Since she doesn't speak, keeping her looking cared for at least lets caretakers know that she is loved and we expect her to be treated as a human being. I imagine parents of typical children might have that same philosophy, but I can only speak to my experience.
The myth element dealing with ABA is a bit strange. The first statement seems focused on the prohibitive nature due to the commitment. Then it points out the implementation as being a form of abuse and lastly hints of discrediting the practice on the whole. Not sure what part is myth here...
I am not an expert but I know how it's worked for my kid and several other families. It's my understanding that Lovaas and early practitioners of ABA were much more strict in their approach. Children were made to sit for long periods through repetition and there was an element of "correcting" that could include a slap or stern language. From my understanding and experience this is just not the case anymore. ABA has adopted a lot of the methodology of other treatments such as floortime where the session is a play environment. There are discrete trials and it's still very data driven but it's structured into activities that the child (or adult) are motivated by. If ever my child was not enjoying their time or was being "abused" in any fashion we would be the first to stop the therapy.
We've encountered a number of older adults who work with children who are horrified that we chose to go with ABA as treatment. Their views are largely based on decades old information of the implementation. We've had those same people sit in on sessions and by the end they are taking notes and asking questions about ABA.
We do 20+ hours a week. It's intense but the intensity level is governed by my child's enthusiasm and willingness. If you have an ABA provider who is punishing, pushing or not creating a fun and loving atmosphere for your child then please speak with someone else (though I know this is not the case for vast majority of people).
We felt that a lot of what floortime included were things we were doing (based on reading a number of books)... and I mean that as a positive. While I appreciate the child directed nature I felt like the structure and data driven model provided a better framework for our daughter. She's very young and a lot of what we work on are super fundamental skills. ABA (at least our provider) has been very thoughtful about creating a plan that identifies her struggles and implements strategies that are tailored to her to build skills.
We tried a lot of things and could see positives in all of them... so we ultimately decided to cherry pick what we like and help structure her program. ABA provided us the framework to measure what works and what we need to change.
I encourage parents to try a few things and see what works for them.
Myth #1: It is partly a diagnosis issue but that will not be solved by waving a spectrum wild-card. Strictly all mental-health disorders are present in a normal state in the general population. That goes for mania, depression, oscillations between the two, lack of empathy, anxiety, and even psychosis (e.g. it would be very unhealthy to not be somewhat paranoid these days, dreams are necessary hallucinations). The inability to fluidly shift among these many ways of dealing with reality, following the circumstances is, in my own personal book, the problem. Past a certain degree of rigidity, that itself fosters behaviors, we have a problem and often the person is aware of that. That ties in with Myth #2.
In my experience, it's not lack of empathy but a deficit in the ability to intuitively project into an other. A very large proportion of our interactions and behaviors rests on intuition and subconscious processing. I often compare autism to flying instruments. Try it and you'll very quickly get a clue of what it feels like to lack this intuitive processing.
The sad and hard thing is that autistic people do suffer from that and are often driven crazy not by the autistic thing but by the, secondary, suffering.
For adolescents. it's even worse: they fly instruments in a storm.
Myth #3: So it really isn't about normalizing but about increasing flexibility. And reducing suffering is pretty much a pre-requisite towards that. Even in Aspies, this suffering is sometimes so great that it reminds me of homosexuals before the invention of the "coming out".
We need more coverage of scientific journal articles, such as the many papers that point to cerebellar involvement in autism, which Silberman does not discuss at all. The lack of hard science in the debate makes it too easy for myths and vague superstition--even among doctors--to fill the gap.
When I was a kid in the 70s - 80s, I had never met another child with autistic like behavior. Yet, of my son's friends, two of them are clearly autistic (and diagnosed), and several of them seem on the spectrum (including my son). I also have several friends with autistic children. How could it be that it was just under diagnosed previously?
On the other hand, my parents recall me having 'autistic like' behavior until I was 5 or so. In fact, I didn't speak until I was 3. I asked my mom about this, and she said she wasn't worried because she figured that I'd speak eventually. Such a strange attitude to me as a modern parent.
Does anybody take into account more modern business practices of putting tens of thousands of smart people in a small geographic area? That leads to smart people breeding with smart people which seems to be a known catalyst for spectrum disorders.
Before the mid 1900s, we didn't have mass service/technical employment (read: companies requiring "smart" employees instead of interchangeable factory labor) or ease of global relocation on a whim. You'd grow up on a farm, meet someone from your town, then settle down in your own town, and the cycle would repeat for generations.
Something somewhat related, the diagnosis a child gets is highly dependent on the educational level of the mother. Higher educated mothers are more likely to have a child with Aspergers then "regular" autism. The cause is probably not genetic but more likely that a "smarter" mother will try to get a better (Aspergers) diagnosis then a mother with less intellect.
EDIT: I was mistaken, it was mentioned. Bad reading on my part :-)
EDIT: Hehe, no problem. I lost count of how many times I overlooked things in articles that I skimmed.
I'm sorry but this is true. I know plenty of (diagnosed) autistic people and they seem to cope okayish with their daily lives. The real deal - and I've read heartbreaking articles about it - is when the (even grown up) autist cannot take a shower on his own, and when he is asked a question he is merely capable of repeating fragments of things he heard before, over and over again. No normal communication is possible. A severe disability. Mental disorders are massively overdiagnosed these days, it's a business with little backing of solid science, and I ask anyone who claims the opposite to show me solid evidence and research papers.
I don't think you know what you're talking about, which is confusing because you have expressed a very strong opinion about the subject.
Once I knew what the hell was actually going on I could then take steps to fix it correctly, scientifically, using proven methodology and techniques that worked for me. Instead of just throwing whatever at the wall and seeing what stuck I was seeking treatment that was targeted at exactly my issue and I could connect with others that were going through or who had gone through therapy for BED and who could relate to what I had gone through/was going through.
Being able to name what's going on is an enormously powerful moment. Look at all the stories of people who have had some mystery illness or cancer or some rare diagnosis: they all talk about the relief they felt when they finally were diagnosed, even if the diagnosis was grim or didn't have an available treatment. There's a huge relief in knowing because then you have a starting point, somewhere to begin from, somewhere to rally yourself and set out away from, somewhere to call your personal "ground zero".
I'm dyslexic, I have a daughter being tested for autism this month. I want the diagnosis to help better understand her and help her adjust to have a happy life. She isn't even that bad, she has cousins that are far worse, but they are still all autistic (in my daughter's case, still probable). Some autistics kids can't talk, I have a cousin who is very autistic but can drive to work. Another just gets panic attacks. The range and scope is huge.
The reason I ask is because if you don't, then it would seem your family tree actually supports the over-diagnosis theory. To check on this, I did a quick lookup. One source says the prevalence is 1 in every 88 children in the US.
Are her cousins just "more different" in your mind, or do you think perhaps that certain "differences" are indeed bad?
Seriously the mess that is psychiatry is going to take another 50 years to clean up+. It's problems are part of the academic madness that took hold after WWII when every field decided it needed to be 'a science' and tossed out all the ad-hoc knowledge and went straight to theory.
+ Like all fields that ran amuck the current guardians of the truth in psychiatry ain't going to change their minds. So progress is measured in funerals.
When stating your opinion as fact, the onus is on you to give evidence. I ask you for solid evidence and research papers.
For reference, I've got a physical handicap that is part of a spectrum. There are folks like me who can't go a couple weeks without medication, and others who have such a minor expression they would never know they had the condition unless in certain medical circumstances. In reality, some of those who would fit the diagnosis on a medical basis have lifestyles which would indicate they do not have the condition. On the flip side, my lifestyle has been forced to conform to the condition, so to speak, in order to appear "normal" on a day-to-day basis.
Because I received some special accommodations over the years, I got first-hand interactions with kids/youth with other conditions as well. When looking back at those years, I'm reminded of the (very real) condition labeled Obsessive Compulsive Disorder (OCD). Again, it's a disorder along a spectrum, not necessarily testable by blood, but there are methods for a diagnosis.
As the condition itself got more commonly known, the phrase "I'm a little OCD" started to seep into the US lexicon. In my experience, these were (most often) people who genuinely didn't have the condition who felt that by saying they had some symptoms, but, more than likely, would never fit the diagnosis. This was brought to my attention by a drummer friend in college, who genuinely had OCD tics (silverware arrangement before eating) and shared with me his frustration at the, well, minimizing of his condition.
The whole gist of this musing is that based on my upbringing, I've never wanted my condition / disability / handicap, nor would I want to be public about it and seek special treatment as a habit. As society in the US has changed to be more understanding and accepting of individual issues (to an extent), be it a handicap, socially progressive sexual preference and expression that used to be highly taboo, or a food-type allergy, I see there is a genuine trend towards special accommodations as a right to be fought for. It's a benefit to those who need it, but it's also an avenue for exploitation by those who feel compelled to do that...and when criticized, there's an immense push-back.
So, without being too glib, first it was OCD, then it was ADHD, and now it's Autism. Each one is genuine, and each has measurable symptoms with respect to functioning in daily life. However, unlike my condition, which nobody in their right mind would want or advertise unless for straight up bullshit sympathy, there are some benefits to over-stating one's personal affliction.
I've no doubt some people would take issue with this perspective, but if I'm framing it properly, that would potentially be the avenue for more research via psychology: Studying human behavior relating to adopting a negative for access to a positive. In the most extreme case, I'd reference when a person fakes cancer for sympathy and/or financial gain (of which there are documented cases), and compare that to parents who simply want to understand their child and will look all over for answers, or convince themselves that somehow what they've come across is the answer.